text:
Posts tagged 'Minister for Finance'
Two weeks before new property tax is announced
The IMF thinks it should be levied at yearly 0.5% of a home's market value, Minister for Finance Michael Noonan indicated that it will be closer to 0.25% and because the IMF was using out-of-date figures for local authority rates and stamp duty, the view on here is that it should be closer to 1% of market value to bring our property taxes in line with OECD countries. And the betting on here is that by 2015, it will be closer to 1% than the 0.25% hinted at by Minister Noonan.
But for 2013, when Budget 2013 is announced on 5th December 2012, you can probably expect an average property tax of €300-500 equating to about €500-600m in a full year, and given the necessity of having some exclusions and waivers and the ending of the €70m second home levy and the cost of administration, it is more likely to be an average of €400-plus on a €160,000 home with a 0.25% flat rate apply to bands of property values eg less than €50,000 to pay €125, home valued between €100-200,000 to pay €500. The Government has signaled that the new tax will be collected from mid-2013 but don't let that fool you into thinking you'll get a 50% discount in 2013, you'll have the pay the full annual sum by the end of 2013!
full article at source:http://namawinelake.wordpress.com/2012/11/19/two-weeks-before-new-property-tax-is-announced/
30 IBRC staff give two fingers to Noonan when asked to waive portion of salaries over €200,000 (thepressnet.com)
How To Calculate Property Taxes (answers.com)
Minister Noonan admits he didn't even bother seeking paycuts at basketcase Irish Life and Permanent (namawinelake.wordpress.com)
IBRC executive to earn over €500,000
Bell Addresses Fine Gael Ard Fheis (Photo credit: DUP Photos)
Another senior executive will join the former Anglo Irish Bank on Monday on an annual pay package of more than €500,000 in a deal that has been signed off by the Minister for Finance Michael Noonan.
He will be the seventh executive at the bank on a total package of more than €500,000 a year. Kevin Blake joins State-owned Irish Bank Resolution Corporation as chief risk officer and will sit on the bank's executive committee.
The bank confirmed Mr Blake would be paid in line with the other senior executives at the bank, who are paid total remuneration packages of more than €500,000.
The Irish Times revealed earlier this week the names and pay of the bank's five highest-paid executives – each on total remuneration of more than €500,000 – who report to chief executive Mike Aynsley at IBRC.
The Minister disclosed to Fianna Fáil TD Michael McGrath in a reply to a Dáil question that six executives were……………………………..
full article at source:http://www.irishtimes.com/newspaper/finance/2012/1110/1224326409819.html
30 IBRC staff give two fingers to Noonan when asked to waive portion of salaries over €200,000 (namawinelake.wordpress.com)
Six employees of the former Anglo Irish Bank earn more than €500,000 annually (independent.ie)
Landlord locks himself in bar as IBRC swoops on 'indebted' pubs (independent.ie)
IBRC chair says CEO is worth €500,000 salary (newstalk.ie)
Noonan Questions Europe Rescue Fund Role in Running Banks – Bloomberg (bloomberg.com)
BoI Boucher should quit, says Spring (independent.ie)
Irish Bank Resolution Corporation
Today Germany is celebrating its unification
Today Germany is celebrating its unification and we are enjoying a public holiday. Most Germans will be surprised to learn that their government in Berlin is currently engaged in the dismantling of various European states through insistence of forcing catastrophic austerity measures on smaller countries like Greece and Ireland .The politicians in each of these countries are solely to blame for the financial collapse through their mishandling of their economies and their outright criminal negligence and corruption! Berlin has bribed the very incompetent politicians and their advisers to carry out their final solution on the various countries. Below we have an example of one such Irish politician who in spite of Ireland bankruptcy he still enjoys his lottery salary of 250,000:00Euros and perks (see Below)
*Perhaps someone should ask our €250,000* a year Minister for Finance why the cost of running the country is over budget and why this Government is choosing to damage the domestic economy by pulling back on capital expenditure.
* comprising €169,275 ministerial salary plus pension payments for former terms in office which last week's Department of Finance accounts – incidentally now removed from the Department's website – revealed were €55,000 in 2011 for Michael Noonan and "ML Noonan". Plus €12,000 unvouched public representation allowance. Plus dual abode allowance including €6,500 unvouched for property maintenance plus a mileage allowance of up to €1.14 per mile plus 15% unvouched service charge allowance on hotel bills plus daily subsistence allowance of €72.66 when staying in an hotel plus €750 every 18 months to buy a mobile phone plus free parking, gym, language lessons, tax advice. Plus generous pension and termination payments
*Source: http://namawinelake.wordpress.com/2012/10/03/evidence-that-government-is-cutting-2012-capital-programme-to-meet-budget-targets/
As I have said before these Public servants in the Dail are only looking after themselves and to hell with the rest of us .The salaries and perks been paid to Noonan and the rest of the misfits in Government is outright scandalous and totally immoral, the state the country is in! These Greedy Leaches are a cancer that needs to be cut out, less the nation goes under! We cannot afford the keep rewarding treachery by the very people who are supposed to representing the will of the people! These gangsters are sucking us dry and we must take severe action and I am not talking about endless talk of change. These leaches have infested our tools of democracy and it longer functions as it is supposed to, we need to start all over again! But first we need to take action to rid ourselves of this vermin who are out for themselves and their insider buddies!
Wake up Ireland .Who will rid us of these gangsters??? Democracy is dead and the Gombeens and stroke politicians have total controlee over our so called free society as they dance in the never-ending musical char's political farce that our political system has become!
It's Time for real change and this can only mean one thing Revolt against the troika dictatorship and its political puppets who have forsaken our own culture and people .They have taken the thirty pieces of silver each and every one of them. The time has come to stand up for Ireland and her children!
A message to the servants of the Irish people (thepressnet.com)
Evidence that Government is cutting 2012 capital programme to meet budget targets (namawinelake.wordpress.com)
IMF: Cut old age pension and social welfare (thepressnet.com)
Michael Noonan Makes Appearance on Debt Deal or No Deal (donegaldollop.wordpress.com)
"Our own incompetent gombeen lot back from holliers" (thepressnet.com)
The rich are getting richer and the poor are getting poorer!
The rich are getting richer and the poor are getting poorer – it's official, says Richard Boyd Barrett
PBPA TD lashes gross unfairness and inequality in the distribution of austerity burden and calls for radical shift in tax policy
Richard Boyd Barrett TD for the People Before Profit Alliance/ULA challenged Taoiseach Enda Kenny today during leaders questions over the "gross inequality and unfairness" in the manner in which "the pain of austerity policies has been imposed on the least well-off and most vulnerable sections of Irish society, while the wealthiest people in the country have been protected and in some cases have actually increased their incomes.
Deputy Boyd Barrett's challenge to the Taoiseach comes in the aftermath of Social Justice Ireland's recent report showing that the poorest households in Irish society have seen their disposable incomes decline by 18% whereas the wealthiest households have seen their incomes actually rise by 4%.
Deputy Boyd Barrett also referred to answers he received recently from the Minister for Finance in response to Parliamentary Questions on the annual incomes of the highest earners in the country and the levels of effective tax paid.
The answers provided by the Minister to questions submitted by Deputy Boyd Barrett detailed the earnings the top 10,000, top 1%, top 10%, top 20% of earners and showed that these very high earners are only paying effective income tax rates of between 29% and 21%. For example, the top 10,000 earners with total earnings of €5.959 billion and average earnings of €595,905 per year paid only €1.715 billion in income tax, an effective tax rate of 29%. The top 10% of earners with total earnings of €29.6 billion and average earnings of €136,710 per year only paid €7.08 billion in income tax, an effective rate of 24%.
Richard Boyd Barrett said: "It's official – what ordinary people knew all along, what we have been saying in the Dail for the last year – the rich are getting richer and the poor are getting poorer.
These facts and figures from social justice Ireland and the answer to my own Parliamentary questions demonstrate, in the most dramatic fashion, that working people and the poor are getting it in the neck with cuts and austerity while the very wealthiest in our society are being protected.
All the promises in the programme for government about "protecting the vulnerable and to burden sharing on an equitable basis" have now been fully exposed as hollow.
There is no equity. There is no burden-sharing. Rather, this government like the last government are using the atmosphere of recession and crisis to facilitate a further transfer of wealth from those who have virtually nothing to those who have virtually everything.
Contrary to the the constant government mantra that there is "no pot of gold" and their constant dismissal of our calls for higher taxes on the very wealthy, we discover that there is a massive and growing pot of gold in the hands of the super-rich in our society.
If for example we raised the effective tax rate on the highest 20% of earners to between 40 and 50 per cent, we could raise somewhere between five and six billion in extra taxes. This would still leave this group very well-off but it would allow us to halt and reverse all the cuts imposed on low and middle income earners, on the poor and on the vulnerable.
The government have constantly claimed they have no choices, that austerity and pain for ordinary people was a tragic necessity. We can now see definitively that that has been one big lie. Rather they have chosen to cold-bloodedly to attack the poor and protect the super-rich. That's why it is vital that ordinary people , who are the victims of these unjust policies, begin to mobilise onto the streets. Only people power, protests and strikes can challenge this obscene injustice.
source: http://richardboydbarrett.ie/2012/07/17/the-rich-are-getting-richer-and-the-poor-are-getting-poorer/
comment from Liam:
to annmphelan, Cllr
Just in case you (and the Labour Party) missed this….. I cannot believe what the ILP has come to – the party I supported for 40 years!
It's a sad day for the party and a sad day for the country …not the whole country of course; just the bottom 25% that (used to) support the Labour Party.
I guess it's now just the public / /civil service that supports the party; oh, hang on a minute: don't they vote for the FF…ers?
That's a bit rich! Tax-cheat Mick Wallace wants workers to pay more taxes (independent.ie)
Tax-cheat Mick Wallace wants workers to pay more taxes (independent.ie)
Council officials sent on €10,000 Harvard course (independent.ie)
Anti-poverty programs raise effective marginal tax rates (gregmankiw.blogspot.com)
Whose Incentives? (krugman.blogs.nytimes.com)
Boyd Barrett
Richard Boyd Barrett
With wimps like Kenny and Noonan!
An excellent piece of work and I hope all the dopes in Ireland who voted for the treaty last week will now go down to the Dail and demand the same treatment the Spanish got or are they going to continue to allow Berlin to treat us the Irish like third class citizens in our own country ???With wimps like Kenny and Noonan we are going to be told to shut up and put up with the demands from Berlin.Where is the fighting Irish spirit?
Stand up Ireland and get up off your knees for God sake!
I done my bit for Ireland! (thepressnet.com)
Government needs to give treaty a harder look (thepressnet.com)
Lying Politicians And Words they use to get away with it (thepressnet.com)
We should default on this odious debt now ! (thepressnet.com)
Dail Eireann and Moral Leadership (thepressnet.com)
Noonan: There's no backup fund if Ireland votes No (thejournal.ie)
Wake up Ireland and get up off your knees! (thepressnet.com)
Irish Government lies have been exposed (thepressnet.com)
The Slog
EUROBLOWN: Merkel the Merciful offers Athens a clear choice….
by John Ward
The Angela of Death
…stay in the eurozone and die, or leave the eurozone and be poor.
I wonder if 'choice' is perhaps the most twisted reinvention of a word in the history of language. Jeremy *unt is a great choice driveller: choice of 56 Murdoch Channels all showing braindead soft-porn sh*te. Lansley is another one: choice in the health services available to all. Bollocks: the choice is between having money and getting some service, or the opposite of that.
Angela Merkel, however, has topped everyone for utterly crass, inflexible neo-Nazi hypocrisy this weekend. This is a direct quote from a speech she made yesterday:
"What we have always said is that we want Greece to remain a member of the eurozone. The precondition for that to succeed is that the future Greek government sticks to the memorandum…
Why hasn't Minister Noonan revealed the identity of NAMA's mystery investor?
Yesterday Minister for Finance Michael Noonan issued a statement in which he stated that the sale of the 17% stake in NAMA held by Irish Life Investment Managers had "just been agreed" and the sale was to "private investors". The Minister isn't saying who the new "private investors" are, and yesterday all sorts of rumours spread naming everyone from Bord Gais to Goldman Sachs to Denis O'Brien. NAMA itself decline to issue a statement which is becoming par for the course for the Agency – remember it didn't issue a statement when it handed over €3.1bn of its cash as a temporary dig-out on the Anglo promissory note either, yet in the past it has issued press releases for what counts as little more than the acquisition of a new pencil
full article at source:
http://namawinelake.wordpress.com/2012/04/24/why-hasnt-minister-noonan-revealed-the-identity-of-namas-mystery-investor/
17% of NAMA sold to un-named private investors (namawinelake.wordpress.com)
Bord Gais
Denis O'Brien
The Minister for Finance, Mr Michael Noonan TD responds
Department of Finance Office of the Minister
UpperMerrion Street, http://www.irlgov.ie/finance
Dublin Ireland.Our Ref: 11/0035/MF 29 September 2011
Dear Mr Clarke
The Minister for Finance, Mr Michael Noonan TD, has asked me to thank you for your e-mail of 13 September regarding the media reports about the High Court case between the Dalys and NAMA, which seemed to suggest that NAMA was cutting a sweetheart deal in this case. While the facts set out hereunder may or may not assuage your concerns in this matter, it is important to explain these facts to set some context at the very least.
The first point is that NAMA can only operate in accordance with the law in general and the provisions of the National Asset Management Act 2009 in particular. Section 211 of the NAMA Act was included specifically to deal with cases where assets were being transferred into the names of relatives in an attempt to hinder NAMA. This section providesthat in certain circumstances the High Court may, upon application by NAMA or a NAMA group entity, declare disposals of assets of debtors and guarantorsetc. to be void if the Court is satisfied that (i) the effect of that disposal is prejudicial to the acquisition by NAMA or a NAMA group entity of one or more bank assets and (ii) it is just and equitable to do so.
The second point is that Mr Frank Daly, the Chairman of NAMA has stated that as the agency is charged with maximizing the commercial return to the taxpayer, i.e., making the highest amount it can on the loans it is handling, it is regularly faced with difficult choices to make between working with a developer on his loans or foreclosing through the appointment of a receiver. The option selected by NAMA is whichever is likely to generate the higher return for the taxpayer. That is the basis for engaging with a borrower. It is certainly not corruption. This particular case was one where the borrower was resisting the attempts of NAMA (and also AIB) to appoint a receiver after attempts to reach a working agreement with the borrower had failed.
The third point is that to date NAMA has secured the reversal of a significant number of asset transfers as part of its business plan agreements with debtors. The Minister understands from NAMA that only a minority of debtors engaged in asset transfers to spouses, relatives or other parties but, in cases where it did occur, the reversal of such transfers is a key requirement imposed by NAMA before it can agree to a debtor's business plan. Failure by a debtor to accept this requirement is likely to lead to enforcement action.
The final point is that the media reports have glossed over the fact that this was afailed attempt by the Dalys to prevent the appointment of receivers to their assets by NAMA and by AIB. They sought a High Court injunction against the appointment of the receivers and the Court refused their application. NAMA has confirmed that it is now examining all options for the repayment of the Daly loans and that any proposals made prior to the time of the appointment of receivers to the properties have been taken off the table.
Sean Kinsella
Private Secretary to the Minister for Finance
Dear Mr. Sean Kinsella,
May I ask you to pass on to the minister my thanks for your prompt and indebt response?
Response from the Wicklow TD (thepressnet.com)
Wife can keep 7,000,000:00 in cash?(NAMA) (thepressnet.com)
Fears NAMA scheme will inflate property market (politics.ie)
Minister for Finance, Mr Michael Noonan TD
Mr Michael Noonan TD
NAMA Act


text:
Infantile Spasms (West Syndrome)
Medically reviewed by Carissa Stephens, R.N., CCRN, CPN — By Donna Christiano — Updated on May 13, 2022
Infantile spasms, or West syndrome, is a rare condition marked by subtle seizures in a baby, usually within their first year of life. While the seizures may be subtle, they can have serious complications, especially when left untreated.
What are infantile spasms?
Infantile spasms can be described as short and sometimes subtle seizures that occur in babies. These seizures are actually a rare form of epilepsy.
Only about 2000 to 2500 children each year will receive a diagnosis of the disorder in the United States. These seizures or spasms generally occur before your child is 1 year old, with most babies experiencing them when they're between 3 and 7 months old.
Read on to learn more about this condition.
Symptoms of infantile spasms
An infantile spasm can consist of something as simple and slight as a head drop or nod. These spasms may be subtle and can appear in different ways. According to the Epilepsy Foundation, the spasms may consist of:
your baby suddenly stiffening
their arms flinging out as their knees pull up and with them bending at the waist
their head being thrown back as their legs stiffen and straighten
repeated uncontrolled movements such as head bobs or body crunching
The spasms usually only last a couple of seconds but tend to occur close together in a series. The National Institute of Neurological Disorders and Stroke finds that often your child will have multiple clusters of spasms at a time, and your child may have as many as hundreds of spasms throughout the day.
Infantile spasms also usually occur upon waking, unlike benign myoclonic seizures, which tend to occur in your baby as they fall asleep. Some organizations recommend taking a video of the events and showing them to a doctor or healthcare professional if you're concerned that your child may be having spasms.
Causes of infantile spasms
Infantile spasms are a kind of disorder caused by a brain abnormality or injury in your baby that can occur before or after birth. Known causes may include things such as:
genetic or chromosomal abnormalities
a birth injury
a brain infection
a problem with brain development while your baby is still in the womb
While doctors don't fully understand the reason for the connection, these things can cause chaotic brain wave activity, resulting in frequent spasms. In the rest of children, the cause of their spasms is unknown but may be the result of an unidentified neurological problem.
How infantile spasms are diagnosed
If a doctor suspects infantile spasms, they'll order an electroencephalogram (EEG), which is easy to obtain and usually useful for giving a diagnosis. If this test doesn't have clear results, a doctor may order a test called a video EEG.
With this test, as with a regular EEG, electrodes are placed on your baby's skull to help doctors visualize brain wave patterns. A video then captures your baby's behavior. A doctor, usually a pediatric neurologist (a doctor who treats children who have problems with their nervous system), will watch their brain wave activity during and in between your baby's spasms.
These tests usually last from one to several hours and may be done in a doctor's office, lab, or hospital. They may also need to be repeated after several days. Some children with infantile spasms will have disorganized brain wave activity. This is known as modified hypsarrhythmia.
If your child has received a diagnosis of infantile spasms, a doctor may also order other tests to see why the spasms are occurring. For example, an MRI can image their brain and show any abnormalities in its structure. Genetic testing can pinpoint genetic reasons contributing to their seizures.
It's important that you get medical help right away if you think your baby is having infantile spasms. The disorder can have very serious developmental consequences, especially if it's left untreated. Your child has the best chance of limiting those negative effects with early treatment.
Complications of infantile spasms
Babies with infantile spasms frequently have mental and developmental problems. In research published in the Annals of Indian Academy Neurology, at 3 years after receiving their diagnosis, only 11.3 percent of the children studied were seizure free and developmentally neurotypical. Many had issues with:
fine and gross motor development
Additionally, 74 percent of the children in the study displayed some traits of the autism spectrum.
Some children will have no complications though. The researchers also noted that when there are no known health factors causing the seizures and diagnosis is prompt, 30 to 70 percent of children with the disorder will have neurotypical development.
Treatment for infantile spasms
One of the major medications used to treat infantile spasms is adrenocorticotropic hormone (ACTH). ACTH is a hormone that's naturally produced in your child's body. It's injected into your child's muscles and has been shown to be very effective in stopping spasms.
Because it's an extremely powerful drug that can cause dangerous side effects, it's generally given in low doses for a short amount of time. More common side effects may include:
edema, or swelling from fluid retention
increased appetite
low potassium in their blood
Rare but more serious side effects may include:
mental status changes due to high blood pressure
Doctors sometimes use an anti-seizure medication called vigabatrin (Sabril) and steroid therapies, such as prednisone. Limitations of ACTH treatment, such as high costs, availability issues, and side effects, can sometimes make these alternative medications a better option. But both of these alternative drugs can also have significant side effects.
A recent 2021 study found that initial treatment success rates were similar for the three types of treatment:
ACTH: 46 percent
oral steroids: 44 percent
vigabatrin: 37 percent
These were the percentages of children who had no additional seizures after 30 days of starting initial therapy. You and a doctor will have to assess which is the right course of treatment for your baby.
When drug therapies fail to stop the spasms, some doctors may recommend other options. In some cases, surgery to remove the part of the brain causing the seizures may be recommended. A ketogenic diet has been studied to see if it could reduce some symptoms, though more research is needed to fully understand any potential benefits. A ketogenic diet is a high-fat, low-carbohydrate eating plan.
Outlook for children with infantile spasms
Infantile spasms are a complex and rare disorder that can have very serious consequences. It can lead to death in some children and cause intellectual disabilities and developmental problems in others. Even if the seizures are managed, the damaging brain effects can remain.
It's important to note that some people with this condition will live healthy lives. This is more likely to be true if the brain abnormality that's causing the seizures can be treated, no cause for the seizures can be identified, or diagnosis is given early, and the spasms are well managed.
What can trigger infantile spasms?
Brain abnormality or injury that can occur before or after your child's birth may cause infantile spasms. Causes can include brain tumors, birth injury, or problems with brain development while your baby is still in the womb.
Are infantile spasms serious?
Yes, infantile spasms can be very serious. It's essential for infantile spasms to be treated as quickly and effectively as possible to maximize your child's developmental potential.
Can infantile spasms go away?
Yes, infantile spasms usually stop before 2 to 4 years of age. But according to the National Institute of Neurological Disorders and Stroke, most children with infantile spasms will develop other types of seizures.
Last medically reviewed on May 12, 2022
Basics of ACTH therapy. (n.d.).
epilepsy.com/stories/basics-acth-therapy
Grinspan ZM, et al. (2021). Comparative effectiveness of initial treatment for infantile spasms in a contemporary U.S. cohort.
n.neurology.org/content/97/12/e1217.long
Guang S, et al. (2022). Hormonal therapy for infantile spasms: A systematic review and meta-analysis.
frontiersin.org/articles/10.3389/fneur.2022.772333/full
Hernandez A, et al. (2020). Infantile spasms West syndrome.
epilepsy.com/what-is-epilepsy/syndromes/infantile-spasms-west-syndrome
Hussein SA. (2021). Infantile spasms.
childneurologyfoundation.org/disorders/infantile-spasms/
Infantile spasms. (2022).
ninds.nih.gov/health-information/disorders/infantile-spasms
Infantile spasms: Symptoms, causes, and treatment. (2020).
healthychildren.org/English/health-issues/conditions/seizures/Pages/Infantile-Spasms-What-Parents-Need-to-Know.aspx
Iype M, et al. (2016). Infantile spasms: A prognostic evaluation. https://pubmed.ncbi.nlm.nih.gov/27293335/
Nasiri J, et al. (2017). Therapeutic effects of adrenocorticotropic hormone ACTH in children with severely intractable seizure.
ncbi.nlm.nih.gov/pmc/articles/PMC5582355/
Prezioso G, et al. (2018). Efficacy of ketogenic diet for infantile spasms: A systematic review. https://pubmed.ncbi.nlm.nih.gov/28875525/
Smith MS, et al. (2021). Infantile spasms.
Yang H, et al. (2020). Early surgical intervention for structural infantile spasms in two patients under 6 months old: A case report.
aepi.biomedcentral.com/articles/10.1186/s42494-020-00025-x
Donna Christiano
Carissa Stephens, RN, CCRN, CPN
Medically reviewed by Seunggu Han, M.D.
Learn about hemifacial spasms, including potential treatment options.
What Causes Stomach Spasms?
Medically reviewed by Graham Rogers, M.D.
We'll explain causes for stomach spasms and what you can do to get relief from this symptom.
Carpopedal Spasms
Medically reviewed by William Morrison, M.D.
Carpopedal spasms are sporadic, painful muscle contractions in your hands and feet. Learn about the causes and treatment options for this condition.
Understanding Lip Twitching
Medically reviewed by Elaine K. Luo, M.D.
Is your lip twitching? This odd sensation of your lip shaking or trembling can be annoying. It can also be a sign of an underlying medical condition…
Understanding Psychogenic Nonepileptic Seizures ('Pseudoseizures')
Medically reviewed by Nancy Hammond, M.D.
Learn about psychogenic nonepileptic seizures (PNES), formerly known as pseudoseizures. Compare them to epileptic seizures, and find out about…
What Is the Seizure Threshold, and What Can Change It?
Medically reviewed by Heidi Moawad, M.D.
Your seizure threshold relates to your likelihood of having a seizure. Antiepileptic medications may raise this threshold, but some drugs can lower it.
10 of the Best Devices for People with Epilepsy
People with epilepsy can have seizures in their sleep, which can be dangerous. Learn about seizure alert and data collection devices for epilepsy.
Learning to Live with Dravet Syndrome
While Dravet syndrome can cause dangerous seizures, it doesn't always affect one's life expectancy. Many of those with a diagnosis of the condition…
What Are Febrile Seizures, and Can They Cause Epilepsy?
Febrile seizures cannot cause epilepsy, but in certain circumstances, febrile seizures may mean a child is at an increased risk for epilepsy.
Late Actor Cameron Boyce's Legacy: Shining Needed Light on Epilepsy
After their son's unexpected death, Libby and Victor Boyce are championing epilepsy education.

redpajama_set_name: RedPajamaCommonCrawl


text:
Q: Facebook-derived profile images are not displayed in Firefox when tracking protection is enabled Thanks to KacosPro, we've identified the cause: Firefox's new Tracking Protection blocks these images:

Some member's picture displays as a white square instead of real picture. For example there https://physics.stackexchange.com/users, the user niels nelsen shows as a white square, but not on Windows. When I click on his profile, something even stranger happens, the top half of his picture is grey, the bottom half is white.
The exact same bug happens for some members only. Let me provide a few of them: https://physics.stackexchange.com/users/40292/niels-nielsen, https://physics.stackexchange.com/users/132371/%c3%81rp%c3%a1d-szendrei, https://physics.stackexchange.com/users/68181/time4tea, and https://physics.stackexchange.com/users/176409/snoob-dogg.
Happy debugging!
Edit: Apparently some people believe(d) the ISP was blocking "graph.facebook.com", or something like that. A ping test as well as connections using a browser to graph.facebook.com, fbcdn.net and this link seem to point out that the domain is in fact not blocked. Thus, to me, the mystery is still not elucidated.
Adding a picture of the whole thing.

A: It's because of Firefox Tracking Protection, as far as I know it will happen on all OS, it happens for me on macOS too.

When this shield appears on the url bar is because it blocked some parts of the page

redpajama_set_name: RedPajamaStackExchange


text:
32-bit DSP right mix for embedded control
By Kedar Godbole, EE Times
December 11, 2003 (7:14 p.m. EST)
URL: http://www.eetimes.com/story/OEG20031211S0048
Modern applications requirements are increasingly demanding. Consequently designers must do more with less, integrating multiple functions into the same processor and optimizing system cost. And designers must choose from an array of programmable processors, ranging from the 8-bit microcontroller to the 32-bit digital signal processor.
In a control application-for example, motor speed or position control-the designer must ensure that the system meets the dynamic performance specifications. In addition, the system must implement several other functions, including sensor elimination algorithms, power-factor correction, noise filtering and spread-spectrum techniques to control electromagnetic emissions. Most of these objectives are gained through implementing mathematical algorithm processing, so a processor capable of executing numerically intensive algorithms is warranted. Determining the word length of the processor required demands an insi ght into those algorithms.
The most common control implementation uses either a proportional-integral-derivative or a state-variable-based controller. Computations within such controllers must be implemented with high precision to avoid issues such as limit cycles and overflows, and to ensure proper intersample behavior. Today's designs need 32-bit-wide coefficients and intermediate variables for the best performance.
General-purpose 16- and 32-bit microcontrollers are inefficient at processing mathematical computations. Bolt-on multipliers lack the data path to support sustained multiply and accumulate for high-performance numerical computation. DSPs, which are designed to process numerical computations with the highest possible efficiency, are optimally suited to run the mathematical control law computations. A key consideration is the width of the numbers to be processed and the native processor word length. A 16-bit signal processor cannot process 32-bit numerical problems efficiently. Im plementation of multiprecision arithmetic is extremely inefficient, usually by a factor of four to 10.
Second, to ensure proper responses to high-frequency dynamics, designers of servo systems often choose to oversample, leading to numerical-conditioning challenges. These are easily addressed by 32-bit signal processors. Modern 32-bit DSPs also excel at offering architectures that are efficient at running compiled C code. In general, a 32-bit processor can implement operations such as 32-bit increments and decrements faster than a comparable 16-bit processor. Also, a 32-bit processor typically offers a larger memory reach, simplifying the memory design.
A 32-bit DSP emerges as the solution with the necessary processing ability, complemented by the appropriate peripherals. This device supplies an optimal solution at very competitive costs.
When selecting a programmable processor, significant trade-offs involve available integration and code size. Modern 32-bit DSPs are integrating ever more peripherals. Control-specific peripherals such as pulse-width modulators, communication ports and analog-to-digital converters let designers eliminate external components and reduce system cost. Integration of large amounts of flash memory and RAM eliminates external flash/RAM devices, again reducing cost and complexity.
The code density of 32-bit processors has been a much-examined trade-off. The latest DSP designs are using a judicious mix of 16-bit and 32-bit instructions. By packing the instructions such that they are 32-bit only when the amount of information that must be encoded needs 32 bits, and using 16 bits for the rest, the code becomes dense, reducing memory needs.
Since a 32-bit DSP uses wider internal buses, it needs more gates than an equivalent 16-bit DSP. The die size for a modern embedded processor, however, is dominated by the memories and peripherals integrated. That, coupled with shrinking semiconductor geometries, makes 32-bit DSPs attractive.
In the case o f controllers that must function equally efficiently as both microcontroller and DSP, a tuned architecture and peripheral choices are major considerations. For the high-precision control market, this means a core architecture highlighted by 32 x 32-bit multiplier, 32-bit times, real-time JTAG, 32-bit registers and a read-modify-write arithmetic logic unit. Peripherals include PWMs, encoder interfaces, 12-bit A/D, watchdog timer and CAN interface.
Electric motors consume two-thirds of the industrial electric consumption and one-fourth of the residential electric consumption, so proper sizing of electric motors is important. Often such motors are oversized to meet transient specifications, or else complex mechanical assemblies are added to handle transients. A smart controller implementing vector control can provide faster transient response, simplify the system and lead to better overall efficiency and reliability.
Position predictions
Vector control algorithms involve measuring or predicting the position of the rotor flux and then placing the stator flux, generated by a polyphase winding, in optimal fashion to generate the most torque for a given flux configuration. For a permanent-magnet motor, the stator flux is placed 90 degrees away (electrical angle). This gives the best possible torque production, since the torque produced is directly proportional to the sine of the angle between the fluxes. (In an ac induction motor, the relationship between the fluxes is more complicated, owing to the magnetizing component of the flux, but the basic principle is the same.)
The challenge in implementing cost-effective smart control is in the mathematical complexity of the algorithms. Most MCUs are not able to deal with such computational complexity in real-time, but modern DSP controllers provide the computational power required for smart control, as well as SoC integration and software development support.
Texas Instruments has assembled a software suite to support advanced con trol. TI's 150-Mips TMS320F2812 digital signal controllers illustrate the new combination of DSP performance and flexibility. A single-cycle 32-bit multiply-accumulate data path, or dual 16-bit MACs, combine high-end precision and DSP speed. High-speed interrupt handling, plus instructions for common control operations such as bit manipulation and branching, make it possible to use the devices in the multipurpose, multitasking environment. PWM outputs, A/D converters, flash and support for the CAN bus provide SoC integration for cost-effective smart motor control. Best-in-class software support includes IQMath, for addressing scaling needs.
Advanced code density and vastly improved compiler technology make today's DSPs better at generating efficient code. Software is a critical aspect of any DSP development, and an extensive library of motor control speeds development time and eases the process.
Kedar Godbole works with digital motor control applications in the Semiconductor Group at Texas Instruments Inc. (Houston).
See related chart
Analysis: CEVA's 32-bit, Dual-MAC TeakLite-III DSP
D32PRO, scalable & royalty free 32-bit CPU
Designing an Efficient DSP Solution: Choosing the Right Processor and Software Development Toolchain
Porting designs to the 32-Bit world without adding cost
Is a single-chip SOC processor right for your embedded project?


text:
Cryptomycina Höhn. – rodzaj grzybów należący do klasy Sordariomycetes.

Systematyka i nazewnictwo
Pozycja w klasyfikacji według Index Fungorum: Incertae sedis, Incertae sedis, Incertae sedis, Sordariomycetes, Pezizomycotina, Ascomycota, Fungi.

Takson ten utworzył Franz von Höhnel w 1917 r. Według Index Fungorum jet to takson o nieokreślonej dokładnie pozycji w systematyce grzybów. Synonim: Cryptomycina Höhn. 1917

Gatunki:
 Cryptomycina filicina (Fr.) L. Holm & K. Holm 1978
 Cryptomycina pteridis (Rebent.) Syd. 1921.

Przypisy

Sordariomycetes

redpajama_set_name: RedPajamaWikipedia


text:
What is the Pediatric Heart Network?
Why Include Children in Research?
Should My Child Join a Study?
Rights and Responsibilities in a Study
Ensuring Safety in PHN Studies
My Child's Nutrition and Activity
Coping With a Chronic Illness
Bereavement - Families
Communicating with your Child's School and Teacher
Growing Up with CHD
Healthy Lifestyle & Healthy Heart
Lifestyle Choices & Risky Behavior
Bereavement - Teens
How Studies are Created and Monitored
Is a Clinical Study Right for Your Patient?
How to Refer a Patient for a Study
Echo Z-Scores
Developing a Research Career
PHN Public Use Datasets
Relevant NHLBI Resources
Joining the PHN
PHN Policy Manual
PHN New Study Proposal Form
Completed Studies
Study Map
About the PHN
PHN Scholar Award Recipients
Home Resources & Publications Publications
More pages in this sectionPlus
Collaborative Learning (Observational Study)
Utilizing a Collaborative Learning Model to Promote Early Extubation Following Infant Heart Surgery. W. T. Mahle, Pediatr Crit Care Med; 2016 Oct;17(10):939-947.
This study compared how well babies did after surgery, for Tetralogy of Fallot or coarctation of the aorta, at research sites where babies were removed from the ventilator early (called early extubation) versus at research sites where babies were not taken off the ventilators early. The clinical practice guideline used at the intervention sites significantly increased the rate of early extubation with no change in the rate of reintubation or postoperative ICU length of stay.
Rationale and methodology of a collaborative learning project in congenital cardiac care. M. J. Wolf, Am Heart J; 2016 Apr;174:129-37.
This paper describes how collaborative learning was used to develop a clinical practice guideline to design a study examining early extubation of babies after heart surgery.
Echo Z-Score & Normal Electrocardiogram (Observational Studies)
Echo Z-Score Publications
Relationship of Echocardiographic Z Scores Adjusted for Body Surface Area to Age, Sex, Race, and Ethnicity: The Pediatric Heart Network Normal Echocardiogram Database. L. Lopez, Circ Cardiovasc Imaging 2017; 10(11):e006979.
Data were collected on 3566 healthy nonobese children ≤18 years of age with normal echocardiograms to produce reference values for echocardiogram measurements based on age, sex, race, ethnicity, height and weight. Body size was found to be the best predictor of the sizes of cardiovascular structures, and age, sex, and race did not have a clinically significant effect on this relationship.
Normal Electrocardiogram (ECG) Publications
Electrocardiograms in Healthy North American Children in the Digital Age. E.V. Saarel, Circ Arrhythm Electrophysiol 2018 Jul;11(7):e005808.
Electrocardiography is a cornerstone in the cardiac evaluation of children. Wide variation in previously published data, much of which was obtained before the digital era, provided a strong motivation to obtain more reliable data on electrocardiogram (ECG) measurements in healthy children from North America. This study found that most ECG measurements varied by sex and race and differed from prior studies done in smaller, more racially and ethnically homogeneous populations. This study provides valuable data that can be used clinically for interpreting pediatric ECGs in the modern era for diagnosis or screening of heart disease in North America, particularly for Long QT syndrome and left ventricular hypertrophy.
Fontan (Observational Study)
Contemporary Outcomes After the Fontan Procedure: A Pediatric Heart Network Multicenter Study. P. Anderson, J Am Coll Cardiol 2008; 52:85-98.
The Fontan study was designed to study children born with a single ventricle or heart pumping chamber who underwent a type of surgery called the Fontan procedure Data was collected from 546 children between 6 and 18 years of age about their heart structure and function after surgery, ability to exercise, heart rhythm and certain lab tests. Questions were asked to assess physical, mental, and emotional well being. The study showed that most Fontan survivors had a normal sense of well being. Most had normal ability for the heart to squeeze, but the majority had decreased relaxation of the heart muscle. Ability to exercise was also decreased in most. Children with a single right ventricle (pumping chamber) had decreased function of the heart and its valves compared with children with a single left ventricle. If the Fontan procedure was done at an older age, heart valves did not work as well and children were less likely to have a normal heart rhythm.
Design of a Large Cross-Sectional Study to Facilitate Future Clinical Trials in Children with the Fontan Palliation. L. Sleeper, Am Heart J 2006; 152:427-433.
This article describes how the Fontan study was designed and implemented in the Pediatric Heart Network. The purpose of the study was to determine whether clinical measures of how well the heart is working (such as lab tests, exercise testing, and echocardiogram) compare with health status (quality of life) in patients who have had a Fontan procedure for congenital heart disease. The data will help researchers design future clinical trial.
Additional Publications
Protein-losing enteropathy after fontan operation: investigations into possible pathophysiologic mechanisms. A. Ostrow, Ann Thorac Surg 2006; 82:695-700.
Impaired Power Output and Cardiac Index with Hypoplastic Left Heart Syndrome: A Magnetic Resonance Imaging Study. K. Sundareswaran, Ann Thorac Surg 2006; 82(4):1267-75; discussion 1275-77.
Flow Study of an Extra-Cardiac Connection with Persistent Left Superior Vena Cava. D. de Zélicourt, J Thorac Cardiovasc Surg 2006; 131:785-91.
Relationship of Patient and Medical Characteristics to Health Status in Children and Adolescents after the Fontan Procedure. B. McCrindle, Circulation 2006; 113:1123-1129.
Children with a single ventricle (heart pumping chamber) who have undergone the Fontan procedure are at risk of having poor health because of frequent hospitalizations and surgeries, decreased ability to exercise, and other medical problems. Parents of children in the Fontan study answered questions about their child's physical activity, behavior, emotions and self-esteem. The results showed that as a group, children who have had the Fontan procedure have more problems with vision, speech, hearing, attention, learning, behavior, anxiety and depression compared to children in the general population. The impact of these other problems was made worse by having a lower family income. Future research is needed to identify ways to diagnose, prevent and treat these problems and to recognize the impact they have on children who have had the Fontan procedure.
Physical Activity Levels in Children and Adolescents are Reduced After the Fontan Procedure, Independent of Exercise Capacity, and are Associated with Lower Perceived General Health. B. McCrindle, Arch Dis Child 2007; 92:509-514.
The Pediatric Heart Network studied 147 of the children in the Fontan study to see how physically active they were on a daily basis. The researchers found that these children participated in physical activity far less often than healthy children, even if their exercise tests showed that they are able to exercise. Children who spent less time being physically active believed they were less healthy overall, whereas children who were not able to exercise as well not only believed they were less healthy, but also had lower level of physical function and self-esteem.
Functional State of Patients with Heterotaxy Syndrome Following the Fontan Operation. A. Atz, Cardiol Young 2007; 17 Suppl 2:44-53.
Children with heterotaxy syndrome have been found to have poorer outcomes compared to children with other complex heart problems, even if those children undergo the same surgeries. Eight percent of children in the Fontan study were found to have heterotaxy syndrome. Those children with heterotaxy were compared to children in the Fontan study without heterotaxy, in regards to their medical and surgical history, heart structure and function, ability to exercise, and health status. The study showed that there were no real differences between the two groups in the children's sense of physical and psychosocial well-being or ability to exercise.
The Fontan Procedure Our Odyssey Continues. C. Backer, J Am Coll Cardiol 2008; 52:114-116.
This article describes the results of the Fontan study and how those results may change the way we care for children who will need to have the Fontan procedure.
A Cross-Sectional Study of Exercise Performance During the First 2 Decades of Life After the Fontan Operation. S. Paridon, J Am Coll Cardiol 2008; 52:99-107.
This study discusses the exercise performance of a large group of children in the Fontan study. Of the 546 children in the study, 411 had exercise testing performed, and most (60%) were not able to exercise to peak levels. Those who were able to reach peak exercise were more likely to be older. Many reported fatigue as a reason for not reaching peak exercise. The wide range of performance was found to be related to the whether the heart is able to increase the amount of blood squeezed out of the pumping chamber (stroke volume). The study also showed that as males go through puberty and gain more muscle, the heart after a Fontan procedure may not be able to keep up with increased demands, making exercise more difficult.
Functional Status, Heart Rate, and Rhythm Abnormalities in 521 Fontan Patients 6-18 Years of Age. A. Blaufox, J Thorac Cardiovasc Surg 2008; 136:100-107.
Problems with heart rate and rhythm are common after the Fontan procedure. The purpose of this study was to see if daily health status in children enrolled in the Fontan study was affected by heart rate or rhythm disorders. Researchers found that a lower resting heart rate and a higher heart rate during exercise were only weakly associated with better physical health. Therefore, other factors may have more impact on how children function after then Fontan procedure.
Functional State Following the Fontan Procedure. I. Williams, Cardiol Young 2009; 15:1-11.
Despite improvements in outcomes after surgery, the functional state varies in children who have had the Fontan procedure. This study developed a scoring system for overall function, looking at how the pumping chamber squeezes, the ability to exercise, physical well-being, and certain lab tests. Lower overall function after surgery was found in children who have a right heart pumping chamber, heart pressures that are higher than normal, lower oxygen levels before surgery, abnormal heart rhythms after surgery, and lower income of their caregiver.
Comparison of Echocardiographic and Cardiac Magnetic Resonance Imaging Measurements of Functional Single Ventricular Volumes, Mass, and Ejection Fraction (From the Pediatric Heart Network Multicenter Fontan Cross-Sectional Study). R. Margossian, Am J Cardiol 2009; 104:419-428.
The size and function of a single heart pumping chamber (ventricle) are key elements when managing patients after the Fontan procedure. Children in the Fontan study had echocardiograms and MRIs performed as part of the study. This article describes how closely the measurements compare between different doctors who read the studies.
Parent Versus Child-Reported Functional Health Status After the Fontan Procedure. L. Lambert, Pediatrics 2009; 124:e942-949.
Children ages 10-18 enrolled in the Fontan study and their parents completed forms to assess the child's health status. Parents' perceptions of the functional health status of their children after the Fontan procedure were worse than the children's perceptions of their own well being in several areas.
Laboratory Measures of Exercise Capacity and Ventricular Characteristics and Function are Weakly Associated with Functional Health Status After Fontan Procedure. B. McCrindle, Circulation 2010; 121:34-42.
This study looked at how the well being of children who were in the Fontan study related to the test results from echocardiography, MRI, blood and exercise tests. The results showed that the results of these tests were only weakly associated with health status. This suggests that these tests may not be good markers for functional health status.
Anthropometric measures after the Fontan procedure: Implications for suboptimal functional outcome. M. Cohen, Am Heart J 2010; 160:1092-1098.e1.
The Fontan patient: inconsistencies in medication therapy across seven pediatric heart network centers. P. Anderson, Pediatr Cardiol 2010; 31(8): 1219–1228.
Relation of the size of secondary ventricles to exercise performance in children after a Fontan operation. A. Prakash, Am J Cardiol 2010; 106(11):1652-6.
Arrhythmias in a contemporary Fontan cohort: prevalence and clinical associations in a multi-center cross-sectional study. E. Stephenson, J Am Coll Cardiol 2010; 56:890-6.
Non-Geometric Echocardiographic Indices of Ventricular Function in Patients with a Fontan Circulation. J. Rhodes, J Am Soc Echocardiogr 2011; 24:1213-9.
Practice variability and outcomes of coil embolization of aortopulmonary collaterals before Fontan completion: A report from the Pediatric Heart Network Fontan Cross-Sectional Study. P. Banka, Am Heart J 2011; 162:125-130.
Late Status of Fontan patients with Persistent Surgical Fenestration. A. Atz, J Am Coll Cardiol 2011; 57:2437-43.
Factors associated with serum brain natriuretic peptide levels after the Fontan procedure. A. Atz, Congenit Heart Dis 2011; 6:313-321.
Factors Impacting Echocardiographic Imaging after the Fontan Procedure: A Report from the Pediatric Heart Network Fontan Cross-Sectional Study. R. Williams, Echocardiography 2013; 30:1098-1106.
Cardiac performance and quality of life in patients who have undergone the Fontan procedure with and without prior superior cavopulmonary connection. A. Atz, Cardiol Young 2013; 23(3): 335–343.
Comparison of Fontan Survivors with and without Pacemakers: A Report from the Pediatric Heart Network Fontan Cross-sectional Study. R. Williams, Congenit Heart Dis 2013;8(1): 32–39.
Functional health status in children and adolescents after Fontan: Comparison of generic and disease-specific assessment. B. McCrindle, Cardiol Young 2014; 24(3): 469–477.
Assessment of Diastolic Function in Single-Ventricle Patients After the Fontan Procedure. R. Margossian, J Am Soc Echocardiogr 2016 Nov;29(11):1066-1073.
Ancillary Studies
Impact of Cardiac Rehabilitation on the Exercise Function of Children with Serious Congenital Heart Disease. J. Rhodes, Pediatrics 2005; 116(6):1339-1345.
Children with congenital heart disease (CHD) often can't exercise as well as their peers. Part of this may be due to their heart defect and part may be that they may not be very physically active. A 12-week cardiac rehabilitation program was designed to see if children could improve their ability to exercise safely. Sixteen patients completed the program. Improvements were found in 15 of 16 patients and no patient had any heart problems from the exercise.
Sustained Effects of Cardiac Rehabilitation in Children with Serious Congenital Heart Disease. J. Rhodes, Pediatrics 2006; 118(3):e586-593.
Previous studies have shown immediate benefits when children with congenital heart disease are enrolled in a cardiac rehabilitation (exercise) program. This study aimed to see if the benefits lasted after the exercise program ended. The results showed, compared with children who did not undergo cardiac rehabilitation after the Fontan procedure, children who did participate had significant improvements in exercise function, behavior, self-esteem and emotional state 6 months after their program ended.
Fontan Follow-Up 2 (Observational Study)
Survival data and predictors of functional outcome an average of 15 years after the Fontan procedure: The Pediatric Heart Network Fontan cohort. A. Atz, Congenit Heart Dis 2015; 10(1):E30-42.
The relationship of patient, medical and laboratory characteristics to changes in functional health status in children and adolescents after the Fontan procedure. B. McCrindle, Pediatr Cardiol 2014; 35(4):632-640.
Assessment of Quality of Life in Young Patients with Single Ventricle after the Fontan Operation. K. Uzark, J Pediatr 2016; 170:166-172 Epub 2015 Dec 10.
Longitudinal outcomes of patients with Single Ventricle after the Fontan procedure. A. Atz, J Am Coll Cardiol 2017; 69(22):2735-2744.
FUEL/OLE (Udenafil vs Placebo Trial & Open Label Extension)
Fontan Udenafil Exercise Longitudinal – FUEL/OLE (Udenafil vs Placebo Trial & Open Label Extension)
Design and rationale of the Fontan Udenafil Exercise Longitudinal (FUEL) trial. D.J. Goldberg, Am Heart J. 2018 Jul; 201:1-8.
This manuscript describes the design of the Fontan Udenafil Exercise Longitudinal (FUEL) trial. It is a trial comparing udenafil to placebo in children and adolescents with single ventricle heart disease who have undergone the Fontan operation. This study will examine changes in exercise capacity, heart performance, and vascular function. These outcomes are important in understanding whether udenafil may be a beneficial medication to maintain health for a longer period in this population.
Infant Single Ventricle - ISV (Enalapril vs Placebo Trial)
Enalapril in Infants with Single Ventricle: results of a multicenter randomized trial. D. Hsu, Circulation 2010; 122:333-340.
Rationale and Design of a Trial of Angiotensin-Converting Enzyme Inhibition in Infants With Single Ventricle. D. Hsu, Am Heart J 2009; 157:37-45.
Angiotensin-converting enzyme (ACE) inhibitors are medicines that improve heart function in adults with heart failure. Infants with a particular type of congenital heart defect (known as single ventricle) have been shown to have abnormal heart function and poor growth. This study was designed to determine if giving ACE inhibitors to babies with single-ventricles would improve their growth, heart function and development. This article describes the design, the participants and the procedures of this trial.
Birth Weight and Prematurity in Infants With Single Ventricle Physiology: Pediatric Heart Network Infant Single Ventricle Trial Screened Population. R. Williams, Congenit Heart Dis 2010; 5:96-103.
Many congenital heart defects are associated with low birth weight and prematurity, but there is little information on birth characteristics of babies with a specific kind of defect, single ventricle physiology. This study compares birth parameters for babies enrolled in the Infant Single Ventricle Trial as compared to the typical US population. Infants with single ventricle had increased rates of preterm birth and low birth weight, and they were more likely to be small for gestational age than the general population.
Renin-Angiotensin-Aldosterone Genotype Influences Ventricular Remodeling in Infants with Single Ventricle. S. Mital, Circulation 2011; 123:2353-2362.
Factors Impacting Growth in Infants with Single Ventricle Physiology: A Report from Pediatric Heart Network Infant Single Ventricle Trial. R. Williams, J Pediatr 2011; 159:1017-22.
Challenges and successes of recruitment in the "angiotensin-converting enzyme inhibition in infants with single ventricle trial" of the Pediatric Heart Network. N. Pike, Cardiol Young 2013; 23(2): 248–257.
Association of impaired linear growth and worse neurodevelopmental outcome in infants with single ventricle physiology: A report from the Pediatric Heart Network Infant Single Ventricle Trial. C. Ravishankar, J Pediatr 2013; 162(2): 250–256.e2.
Superior cavopulmonary anastomosis timing and outcomes in infants with single ventricle. J. Cnota, J Thorac Cardiovasc Surg 2013; 145(5): 1288–1296.
The association of fetal cerebrovascular resistance with early neurodevelopment in single ventricle congenital heart disease. I. Williams, Am Heart J 2013; 165(4):544-550.e1.
Factors Associated with Serum B- type Natriuretic Peptide Levels in Infants with Single Ventricle. R. Butts, Pediatr Cardiol 2014; 35(5):879-87.
Neurodevelopmental outcomes after cardiac surgery in infancy. J. Gaynor, Pediatrics 2015; 135(5):816-25.
Growth Asymmetry, Head Circumference, and Neurodevelopmental Outcomes in Infants with Single Ventricles. T. Miller, J Pediatr 2016; 168:220-225. Epub 2015 Oct 17.
The Effect of the Superior Cavopulmonary Anastomosis on Ventricular Remodeling in Infants with Single Ventricle. R. Margossian, J Am Soc Echocardiogr 2017; 130(7):699-707.e1.
Translating clinical trials into clinical practice: a survey assessing the potential impact of the Pediatric Heart Network Infant Single Ventricle Trial. V. Zak, Cardiol Young 2017; 27(7):1265-1270.
Kawasaki Disease (Methylprednisolone vs Placebo Trial)
Randomized Trial of Pulsed Corticosteroid Therapy for Primary Treatment of Kawasaki Disease. J. Newburger, N Engl J Med 2007; 356(7):663-675.
Children with Kawasaki Disease (KD) are at risk for developing aneurysms (out-pouchings) and enlargement of the coronary arteries, the arteries which bring blood and oxygen to the heart muscle itself. Medications are used to reduce the risk of damage to the coronary arteries and to decrease inflammation. Yet, some children still develop aneurysms and coronary artery enlargement. This trial tested whether adding another type of medication (a corticosteroid) to the standard treatment of aspirin and immune globulin would decrease the amount of coronary artery dilation. The results did not support the use of a steroid in addition for the routine treatment of children with KD.
Treatment of Kawasaki Disease: Response to Letter to the Editor. J. Newburger, N Engl J Med 2007; 356(26):2748.
Delayed Diagnosis of Kawasaki Disease: What Are the Risk Factors?L. Minich, Pediatrics 2007; 120(6):e1434-40.
Late diagnosis of Kawasaki Disease (KD) increases the risk that a child might have enlargement or aneurysms (out-pouching) of their coronary arteries. This study tried to see how many children in the KD study had a late diagnosis and what factors contributed to a late diagnosis. Being less than 6 months of age, living a greater distance from the hospital and having fewer symptoms (incomplete KD) increased the likelihood of late diagnosis.
Coronary Artery Involvement in Children with Kawasaki Disease: Risk Factors from Analysis of Serial Normalized Measurements. B. McCrindle, Circulation 2007; 116:1-6.
This study looked at how coronary artery size changes during when a child has Kawasaki Disease (KD) by performing echocardiograms at the time of diagnosis, at one week and five weeks after diagnosis. The results showed that, in most patients, the coronary arteries are most dilated at the time of diagnosis of KD and they decrease in size over time. The KD study also showed that aneurysms (bulges or outpouches) in the coronary arteries were infrequent.
Associated Symptoms in the Ten Days Before Diagnosis of Kawasaki Disease. A. Baker, J Pediatr 2009; 154(4):592-595.
Many children with Kawasaki disease (KD) have other symptoms that may lead to a delay in the diagnosis of KD. This study investigated common symptoms in children in the KD study (in addition to the symptoms of KD) in the 10 days before they were diagnosed with KD. Symptoms reported were irritability, vomiting, decrease in food/fluid intake, coughing, diarrhea, runny nose, weakness, stomach pain, and joint pain. Symptoms of KD can often be accompanied by symptoms commonly found in other common childhood illnesses. Clinicians should consider the diagnosis of KD, even when other common symptoms are present.
Non-Coronary Cardiac Abnormalities are Associated with Coronary Artery Dilation and with Laboratory Inflammatory Markers in Acute Kawasaki Disease. B. Printz, J Am Coll Cardiol 2011; 57:86-92.
Evaluation of Kawasaki Disease Risk Scoring Systems for Intravenous Immunoglobulin Resistance. L. Sleeper, J Pediatr 2011; 158:831-5.
Predictors of coronary artery visualization in Kawasaki disease. R. Margossian, J Am Soc Echocardiogr 2011; 24(1):53-9.
Marfan (Atenolol vs Losartan Trial)
Atenolol versus Losartan in Children and Young Adults with Marfan's Syndrome. R. Lacro, N Engl J Med 2014; 371:2061-2071.Among 608 children and young adults with Marfan's syndrome (ages 6 months to 26 years) who were randomly assigned to losartan or atenolol, we found no significant difference in the rate of aortic-root dilatation between the two treatment groups over a 3-year period. Aortic-root surgery, aortic dissection, death, and a composite of these events did not differ significantly between the two treatment groups.
Rationale and Design of a Randomized Clinical Trial of B-Blocker Therapy (Atenolol) Versus Angiotensin II Receptor Blocker Therapy (Losartan) in Individuals with Marfan Syndrome. R. Lacro, Am Heart J2007; 154:624-631.
The leading cause of death in people with Marfan syndrome is dilation, tearing and rupture of the aorta, the large artery that delivers blood from the heart to the body. Recent studies in mice with Marfan syndrome showed that treatment with Losartan, a medication used to treat high blood pressure, prevented dilation and improved the structure of the wall of the aorta. This article describes the design of a trial to compare Losartan to the standard medication (Atenolol) for patients with Marfan syndrome. The goal of the trial is to follow over 600 children and young adults for 3 years to determine which drug does a better job slowing the rate of growth of the aorta.
Echocardiographic Methods, Quality Review, and Measurement Accuracy in a Randomized Multicenter Clinical Trial of Marfan Syndrome. E. Selamet Tierney, J Am Soc Echocardiogr 2013; 26(6):657-666.
This study describes the characteristics of the echocardiograms for subjects enrolled in the clinical trial. Even when different doctors reviewed and measured the aortas and heart structures of the trial participants, there was excellent agreement in the measurements. Having good agreement is important for accurately reporting the results of the clinical trial.
Characteristics of children and young adults with Marfan syndrome and aortic root dilation in a randomized trial comparing atenolol and losartan therapy. R. Lacro, Am Heart J 2013; 165:828-835.e3.
This paper describes the population that was screened and then enrolled in the clinical trial. The average age at study entry was 11.2 years, 60% were male, and 25% were older teenagers and young adults. Aortic root diameter z-score was 4.0 and wasn't different by age. Mitral valve prolapse and mitral regurgitation were more common in females. 56% had a family member with aortic surgery and 32% had a family member with a history of aortic dissection.
Influence of Aortic Stiffness on Aortic-Root Growth Rate and Outcome in Patients With the Marfan Syndrome. ES. Selamet Tierney, Am J Cardiol 2018 May 1;121(9):1094-1101.
The PHN randomized trial of atenolol versus losartan in Marfan Syndrome showed no treatment differences in the rates of aortic-root growth or clinical outcomes. This analysis examined treatment effects on aortic stiffness and determined whether baseline aortic stiffness predicts aortic-root growth and clinical outcomes. There was no treatment effect on the rate of change for ascending-aorta stiffness index, aortic-root elastic modulus, or ascending-aorta elastic modulus. We found that atenolol therapy was associated with a fall in aortic-root stiffness index, while losartan therapy was not. Higher baseline aortic-root stiffness index and elastic modulus were associated with a smaller decrease in aortic root z-score and increased risk for clinical outcomes. These data suggest that non-invasive aortic stiffness measures may identify patients at higher risk for progressive aortic enlargement and adverse clinical outcomes, potentially allowing for closer monitoring and more aggressive therapy for such patients.
Predictors of Rapid Aortic Root Dilation and Referral for Aortic Surgery in Marfan Syndrome. A. Hoskoppal, Pediatr Cardiol 2018 Jun 11. doi: 10.1007/s00246-018-1916-6.
This was a secondary analysis of the PHN randomized clinical trial of atenolol vs. losartan in patients with Marfan syndrome that attempted to identify factors that predict rapid aortic root dilation and referral for aortic surgery. We found some statistically significant but only weakly predictive associations between more rapid aortic root dilation and older age, non-white race, and one aortic measurement: higher sinotubular junction z-score. We found similarly statistically significant but only weakly predictive associations between referral for aortic root surgery and some aortic measurements (larger aortic root diameter, higher ascending aorta z-score, and higher ratio between the diameters of the sinotubular junction and ascending aorta). Future studies may clarify whether monitoring generalized proximal aortic dilation and effacement of the sinotubular junction will help to risk-stratify young patients with Marfan syndrome and inform medical and surgical management.
Mitral Regurgitation (Observational Study)
Partial and Transitional Atrioventricular Septal Defect Outcomes. L. Minich, Ann Thorac Surg 2010; 89:530-536.
There have been many improvements in the surgery and care of children with atrioventricular septal defects (AVSD. This article describes the outcomes at 1 and 6 months after repair for children with two particular types of AVSD: partial and transitional AVSDs. Children had short hospital stays and few adverse events around the time of surgery. Also, children who were growing poorly before surgery showed good catch-up growth if the surgery was performed between 3 and 18 months of age. Some children have leaking of the left-sided atrioventricular valve after surgery, particularly if surgery is performed after age four.
Lessons learned from a pediatric clinical trial: The Pediatric Heart Network Angiotensin Converting Enzyme Inhibition in Mitral Regurgitation Study. J. Li, Am Heart J 2011; 161:233-40.
The Pediatric Heart Network designed a placebo-controlled randomized trial to test the effect of enalapril on the amount of left heart valve regurgitation after atrioventricular septal defect (AVSD) repair. Prior to the launch of the trial, a feasibility study was performed to estimate the number of patients with at least moderate mitral regurgitation following AVSD repair. The study was subsequently terminated due to low patient accrual. Several factors led to the problems with enrolling patients: 1) the feasibility study used chart review to assess for valve regurgitation but the trial used echocardiography measurements; 2) clinicians and referring physicians were already believing that enalapril was a good drug to give and many patients eligible for the study were already taking the drug; 3) the echocardiography methods used were developed in adult populations and not children; 4) there are no good data to define the natural history of the disease process.
Surgical management of complete atrioventricular septal defect: Associations with surgical technique, age and Trisomy 21. A. Atz, J Thorac Cardiovasc Surg 2011; 141:1371-9.
This study evaluated contemporary results after repair of a complete atrioventricular septal defect (AVSD) and to determine factors associated with poorer outcomes. Particular attention was paid to type of surgical repair, age at surgery, and presence of Trisomy 21. The type of surgical repair and having Trisomy 21 did not increase the risk of death or serious medical problems. Mortality and morbidity were low. Age at repair ≤2.5 months and need for concurrent surgical procedures were not associated with residual defects or degree of heart valve regurgitation, but were associated with higher resource utilization.
Surgical interventions for Atrioventricular Septal defect subtypes: The Pediatric Heart Network experience. A. Kaza, Ann Thorac Surg 2011;92:1468-75.
Atrioventricular septal defects (AVSD) include abnormalities involving the walls between the heart chambers (atrial and ventricular septa) and the heart valves. The investigators compared patient characteristics, resource utilization, center differences, and outcomes among different types of AVSD. Survival in the current era is excellent, with few residual defects after surgical repair for all AVSD subtypes. Repair of the valves failed to decrease moderate or severe valve regurgitation at the 6-month follow-up. Being older when the heart is repaired increases the risk of moderate or severe valve regurgitation.
Challenges in echocardiographic assessment of mitral regurgitation in children after repair of Atrioventricular Septal Defect. A. Prakash, Pediatr Cardiol 2012; 33:205-214.
It is difficult to quantify the amount of regurgitation from the mitral valve using echocardiography. Since children who have an atrioventricular septal defect repaired continue to have varying amounts of mitral regurgitation, the accuracy of proposed echocardiographic methods was proposed to evaluate the severity of the regurgitation. No method performed well. No method proved to be better than the echocardiographer's subjective assessment of the size of the color Doppler jet and surrounding structures. Reliable assessment of mitral regurgitation remains challenging in this population.
Passive Range of Motion - TEAM 4 Growth (Observational Study)
Passive range of motion exercise to enhance growth in infants following the Norwood procedure: a safety and feasibility trial. L.M. Lambert, Cardiol Young 2017; 27(7):1361-1368.
This non-randomized pilot study enrolled 20 neonates after surgery for heart repair. The aim was to evaluate the safety and feasibility of a passive range of motion exercise program, administered by trained physical therapists for up to 21 days or until hospital discharge. We found the exercise program to be safe for babies with complex congenital heart disease after surgery and feasible to perform.
PHN Scholars
The Pediatric Heart Network Scholar Award programme: a unique mentored award embedded within a multicentre network. L.L. Minich, Cardiol Young 2018 Jun;28(6):854-861.
The Pediatric Heart Network designed a career development award to train the next generation of clinician-scientists in pediatric cardiology-related research, a historically underfunded area. This manuscript described strengths and weaknesses of the program and the scholars' academic achievements for the first two funding cycles. Strengths included clarity and fairness of the review, but feedback on the application was not considered useful. The highest rated benefits were expanding the scholar's collaborative network and increasing publication potential. The 13 scholars were first/senior authors for 97 abstracts and 109 manuscripts, served on 22 PHN committees, and were awarded $9,673,660 in subsequent extramural funding for a return of ~$10 for every Scholar dollar spent.
Residual Lesion Score (Observational Study)
Completeness and Accuracy of Local Clinical Registry Data for Children Undergoing Heart Surgery. M. Nathan, Ann Thorac Surg 2016 Oct 7. pii: S0003-4975(16)30916-X.
The purpose of this study was to assess the accuracy of heart surgery data obtained from a registry compared with data copied from babies' medical charts by research coordinators. Most PHN sites participate in a registry called "the Society of Thoracic Surgeons- Congenital Heart Surgery Database" in which each site collects data around the time of surgeries. For a select set of variables (like blood pressure, length of hospital stay etc), we found that 94.7% of data elements were both complete and accurate within the registry, suggesting that registry data can be an efficient source for research studies.
Single Ventricle Reconstruction - SVR (RV-PA Shunt vs MBT Shunt Trial)
Comparison of Shunt Types in the Norwood Procedure for Single-Ventricle Lesions. R. Ohye, N Engl J Med 2010; 362(21):1980-1992.
In children with a single heart ventricle undergoing the Norwood procedure, a trial was conducted to determine if one of two different shunts resulted in better survival after 12 months without the need for a heart transplant. Babies were randomly assigned to receive either the traditional modified Blalock-Taussig shunt (MBTS) or the right ventricle- pulmonary artery (RV-PA) conduit. The study showed that babies who received the RV-PA conduit had better survival without needing a heart transplant 12 months after entering the study. However, when the babies were followed for a longer period of time, there was no difference between the two groups. The results also revealed that babies who received the RV-PA conduit needed more procedures and had more complications than those receiving the MBTS.
Design and Rationale of a Randomized Trial Comparing the Blalock-Taussig and Right Ventricle-Pulmonary Artery Shunts in the Norwood Procedure. R. Ohye, J Thorac Cardiovasc Surg 2008; 136:968-975.
The first of the three surgeries (the Norwood procedure) for babies born with a single heart ventricle is one of the highest risk procedures in congenital heart surgery. Two types of shunts (tubes) may be used for the first surgery: the traditional modified Blalock-Taussig shunt (MBTS) and the right ventricle to pulmonary artery (RV-PA) shunt. Some research has shown one technique to be better than the other, but other research has shown no differences in the outcomes for each technique. This article describes a trial designed by the Pediatric Heart Network to compare the two types of shunts. In the study, babies were randomly assigned to receive either the MBTS or the RV-PA shunt, and they were followed over time to compare the outcomes.
The Modified Blalock-Taussig Shunt Versus the Right Ventricle-to-Pulmonary Artery Conduit for the Norwood Procedure. R. Ohye, Pediatr Cardiol 2007; 28:122-125.
Babies born with a single heart ventricle require multiple surgeries in order to provide adequate blood flow to the body. The first of the three surgeries is one of the highest risk procedures in congenital heart surgery. Two types of shunts (tubes) may be used for the first surgery: the traditional modified Blalock-Taussig shunt (MBTS) and the right ventricle to pulmonary artery (RV-PA) shunt. This article explains the advantages and disadvantages of each shunt and the Pediatric Heart Network's clinical trial to determine if one shunt type is better than another in this population (see results of the PHN trial).
Prenatal Diagnosis and Risk Factors for Preoperative Death in Neonates with Single Right Ventricle and Systemic Outflow Obstruction: Screening Data from the Pediatric Heart Network Single Ventricle Reconstruction Trial. A. Atz, J Thorac Cardiovasc Surg 2010; 140:1245-1250.
Celiac Artery Flow Pattern in Infants with Single Right Ventricle Following the Norwood Procedure with a Modified Blalock-Taussig or Right Ventricle to Pulmonary Artery Shunt. J. Johnson, Pediatr Cardiol 2011; 32:479-486.
Reporting adverse events in a surgical trial for complex congenital heart disease: The Pediatric Heart Network Experience. L. Virzi, J Thorac Cardiovasc Surg 2011; 142(3): 531-537.
Early neurodevelopmental outcome in hypoplastic left heart syndrome and related anomalies: The Single Ventricle Reconstruction Trial. J. Newburger, Circulation 2012; 125:2081-2091.
Intermediate-term mortality and cardiac transplantation in infants with single-ventricle lesions: Risk factors and their interaction with shunt type. J. Tweddell, J Thorac Cardiovasc Surg 2012; 144(1):152-159.e2.
Does initial shunt type for the Norwood procedure affect echocardiographic measures of cardiac size and function during infancy? The Single Ventricle Reconstruction Trial. P. Frommelt, Circulation 2012; 125:2630-2638.
Variation in perioperative care across centers for infants undergoing the Norwood procedure. S. Pasquali, J Thorac Cardiovasc Surg 2012; 144:915-21.
Risk factors for hospital morbidity and mortality after the Norwood procedure: A report from the Pediatric Heart Network Single Ventricle Reconstruction Trial. S. Tabbutt, J Thorac Cardiovasc Surg 2012; 144:882-95.
Interstage mortality after the Norwood Procedure: Results of the multicenter Single Ventricle Reconstruction Trial. N. Ghanayem, J Thorac Cardiovasc Surg 2012; 144:896-906.
Cause, timing and location of death in the Single Ventricle Reconstruction trial. R. Ohye, J Thorac Cardiovasc Surg 2012; 144:907-14.
Introduction to the Single Ventricle Reconstruction trial. E. Bacha, J Thorac Cardiovasc Surg 2012; 144(4): 880-1.
A Predictive Model for Neurodevelopmental Outcome Following the Norwood Procedure. W. Mahle, Pediatr Cardiol 2013; 34(2):327-333.
Doppler flow patterns in the right ventricle-to-pulmonary artery shunt and neo-aorta in infants with single right ventricle anomalies - Impact on outcome after initial staged palliations. P. Frommelt, J Am Soc Echocardiogr 2013; 26:521-9.
Intervention for re-coarctation in the Single Ventricle Reconstruction Trial: Incidence, risk and outcomes. K. Hill, Circulation 2013; 128(9): 10.1161/CIRCULATIONAHA.112.000488.
A multi-center study comparing shunt type in the Norwood procedure for single-ventricle lesions: 3-Dimensional echocardiographic analysis. G. Marx, Circ Cardiovasc Imaging 2013; 6(6): 934–942.
Risk factors for prolonged length of stay following stage 2 procedure in the Single-Ventricle Reconstruction Trial. S. Schwartz, J Thorac Cardiovasc Surg 2014; 147(6):1791-8, 1798.e1-4.
Variation in Feeding Practices Following the Norwood Procedure. L. Lambert, J Pediatr 2014; 164(2): 237–242.e1.
Impact of pre-stage II hemodynamics and pulmonary artery anatomy on 12-month outcome in the Single Ventricle Reconstruction Trial. R. Aiyagari, J Thorac Cardiovasc Surg 2014; 148(4):1467-74
Associations Between Day of Admission and Day of Surgery on Outcome and Resource Utilization in Infants With Hypoplastic Left Heart Syndrome Who Underwent Stage I Palliation (from the Single Ventricle Reconstruction Trial). J. Johnson, Am J Cardiol 2015; 116(8):1263-9.
The Single Ventricle Reconstruction Trial: The data goes public. S. Bradley, J Thorac Cardiovasc Surg 2016; 152(1):195-6.
Heart block following stage 1 palliation of hypoplastic left heart syndrome. D. Mah, J Thorac Cardiovasc Surg 2016; 152(1):189-94.
Intraoperative Steroid Use and Outcomes Following the Norwood Procedure: An Analysis of the Pediatric Heart Network's Public Database. J. Elhoff, Pediatr. Crit. Care Med 2016; 17(1):30-5.
Association of Digoxin With Interstage Mortality: Results From the Pediatric Heart Network Single Ventricle Reconstruction Trial Public Use Dataset. M. Oster, J Am Heart Assoc 2016; 13;5(1). pii: e002566.
Impact of Operative and Postoperative Factors on Neurodevelopmental Outcomes After Cardiac Operations. International Cardiac Collaborative on Neurodevelopmental (ICCON) Investigators. Ann Thorac Surg. 2016; 102(3):843-849.
Adrenergic receptor genotypes influence postoperative outcomes in infants in the Single-Ventricle Reconstruction Trial. R. Ramroop, J Thorac Cardiovasc Surg. 2017; 154(5):1703-1710.e3.
Development and impact of arrhythmias after the Norwood procedure: A report from the Pediatric Heart Network. M.E. Oster, J Thorac Cardiovasc Surg 2017 Mar;153(3):638-645.e2.
Encrypted prediction: A hacker's perspective. T. Karamlou, J Thorac Cardiovasc Surg 2017 Dec;154(6): 2038-2040.
A prognostic tool to predict outcomes in children undergoing the Norwood operation. P. Gupta, J Thorac Cardiovasc Surg 2017 Dec;154(6):2030-2037.e2.
Survival to Stage II with Ventricular Dysfunction: Secondary Analysis of the Single Ventricle Reconstruction Trial. E. Jean-St-Michel, Pediatr Cardiol 2018 Jun;39(5):955-966.
The Impact of the Left Ventricle on Right Ventricular Function and Clinical Outcomes in Infants with Single-Right Ventricle Anomalies up to 14 Months of Age. M.S. Cohen, J Am Soc Echocardiogr. 2018 Jul 3. pii: S0894-7317(18)30249-9.
We assessed whether left ventricular size and function influence right ventricular function and clinical outcomes after staged palliation for single right ventricle anomalies. In the Single Ventricle Reconstruction (SVR) trial cohort, we studied left ventricle size and function compared to echocardiography-derived measures of right ventricular size and function as well as tricuspid regurgitation. We also assessed the impact of the left ventricle on outcome (death and/or heart transplantation). The hypoplastic left heart syndrome subtype of aortic atresia/mitral atresia was less likely to have a measurable left ventricle compared to other subtypes. Right ventricle end-diastolic and end-systolic volumes were significantly larger, while diastolic indices suggested better properties in those subjects with no measurable left ventricle compared to those with measurable ventricles. Right ventricular ejection fraction and tricuspid regurgitation were not different based on left ventricle size and function. There was no difference between groups in transplantation-free survival up to 14 months of age. In patients with single right ventricle anomalies, left ventricular size and function has a minimal short-term impact on survival and right ventricular performance.
Single Ventricle Reconstruction Follow-Up – SVR 2 & 3 (Observational Studies)
SVR 2: 1-3 Years Post-Norwood Outcomes Publications
Transplantation-free survival and interventions at 3 years in the single ventricle reconstruction trial. J. Newburger, Circulation 2014; 129:2013-2020.
In the Single Ventricle Reconstruction (SVR) trial, 1-year transplant-free survival was better for the Norwood procedure with right ventricle-to-pulmonary artery shunt (RVPAS) compared with a modified Blalock-Taussig shunt (MBTS). At 3 years, we compared transplantation-free survival, echocardiographic right ventricular ejection fraction, and unplanned interventions in the treatment groups. By 3 years, the Norwood procedure with RVPAS compared with MBTS was no longer associated with better transplant-free survival. Moreover, RVPAS subjects had slightly worse right ventricular ejection fraction and underwent more catheter interventions.
Factors associated with neurodevelopment for children with single ventricle lesions. C. Goldberg, J Pediatr 2014; 165(3): 490-496.
This study measured neurodevelopment at 3 years of age and compared it to neurodevelopment at 14 months of age in children enrolled in the Single Ventricle Reconstruction trial. Scores on tests to evaluate neurodevelopment were lower at 3 years of age when compared to a normal population. The results suggest that even when 14-month scores are within the normal range, children with single ventricle heart defects may be at risk for developmental impairment at pre-school age and beyond. Therefore, all children with HLHS and related single ventricle malformations should be followed longitudinally to improve recognition of delays and potential for intervention.
Longitudinal assessment of growth in hypoplastic left heart syndrome: results from the single ventricle reconstruction trial. P. Burch, J Am Heart Assoc 2014; 3(3):e000079.
Poor growth is associated with poor prognosis in several disease processes. While children with single ventricle heart disease are known to be smaller than their peers at birth, there is limited information regarding growth and development in survivors. In this paper we show that single ventricle survivors continue to grow poorly with regards to both height and weight through the first two surgical palliations and at three years of age.
Impact of Initial Shunt Type on Cardiac Size and Function in Children with Single Right Ventricle Anomalies prior to the Fontan Procedure—The Single Ventricle Reconstruction Extension Trial. P. Frommelt, J Am Coll Cardiol 2014; 64(19):2026-35.
The initial shunt type at the Norwood procedure used to supply blood flow to the lungs in infants with single right ventricle anomalies may influence heart muscle function during the second and third years of life. This study tested heart muscle function in children in the SVR trial, comparing those who had a right ventricle-to-pulmonary artery shunt versus the modified Blalock-Taussig shunt. While there were no differences between the groups, a markedly enlarged heart, poor heart muscle function, and significant heart valve enlargement/dysfunction at 14 months of age was associated with poorer survival to the Fontan operation.
Factors affecting Fontan length of stay: Results from the Single Ventricle Reconstruction trial. C. Ravishankar, J Thorac Cardiovasc Surg. 2016; 151(3):669-675.
In the Single Ventricle Reconstruction trial, infants with hypoplastic left heart syndrome (HLHS) who received a right-ventricle-to-pulmonary-artery shunt (RVPAS) versus a modified Blalock-Taussig shunt (MBTS) had lower early postoperative mortality, but more complications at 14 months. This study explored the effect of shunt type and other patient, medical, and surgical factors on postoperative length of stay (LOS) after the Fontan operation. The type of shunt received at the Norwood surgery did not affect how long a baby stayed in the hospital for the Fontan surgery. Rather, more medical complications before the operation resulted in longer LOS after the Fontan operation.
Assessment of Growth Six Years after the Norwood Procedure: Results from the Single Ventricle Reconstruction Trial. P. Burch, J. Pediatr. 2017; 180:270-274.e6.
There is limited information regarding the long-term growth and development in survivors with single ventricle heart disease. This paper assesses growth in these patients after their final palliative surgery until they are school age. These children continue to grow poorly with regards to both height and weight with height being affected to a greater extent than weight.
Heart failure after the Norwood procedure: An analysis of the Single Ventricle Reconstruction Trial. W.T. Mahle, J Heart Lung Transplant. 2018 Jul;37(7):879-885.
Heart failure is a known complication following the Norwood procedure for single ventricle anomalies. Examination of the Single Ventricle Reconstruction (SVR) trial cohort revealed that almost 15% of participants developed heart failure following discharge from the Norwood procedure. Shunt type had no association with heart failure. The risk for developing heart failure was highest in the first year of life. Over half of the children who developed heart failure were listed for transplant, though a significant number died while awaiting a transplant. Among transplant-free survivors to 6 years of age, fewer than 5% of children with palliated single ventricle congenital heart disease had class IV symptomatic heart failure. Several procedure and patient-related factors were associated with development of heart failure, including impaired right ventricular function after the Norwood procedure.
Utilisation of early intervention services in young children with hypoplastic left heart syndrome. K. Mussatto, Cardiol Young. 2018; 28(1):126-133.
Children with hypoplastic left heart syndrome are at a risk for neurodevelopmental delays. This study looked at the types of early intervention services (e.g. speech, occupational, physical therapy) and how frequently services were used from age 1 to 4 years in children who participated in the SVR trial. Significant delay was reported by parents in 18-43% of children at ages 3 and 4. More than half of the children (52-69%) were not receiving services at any age and 20-32% were receiving two or more therapies each year. Despite significant neurodevelopmental delays, early intervention service utilization was low in this group of children.
Transplant-Free Survival and Interventions at 6 Years in the Single Ventricle Reconstruction Trial. J.W. Newburger, Circulation. 2018 May; 137(21):2246-2253.
We examined transplant-free survival and other outcomes at 6 years after the Norwood procedure with a right ventricle-to-pulmonary artery shunt (RVPAS) compared to a modified Blalock‒Taussig shunt (MBTS) in children enrolled in the PHN's Single Ventricle Reconstruction (SVR) trial. The RVPAS group had similar survival without needing a heart transplant at 6 years but required more catheter interventions before the Fontan procedure. After the Fontan procedure, the two shunt groups had similar rates of transplant-free survival and of catheter interventions, as well as similar right heart function, cardiac symptoms, and complications. However, children in both groups had a steady increase in complications over time; by 6 years, 20% had suffered a blood clot, 15% a seizure, and 7.5% a stroke. These data emphasize the importance of close follow-up and the need to find new strategies to improve the long-term outlook for children with single ventricle anomalies.
Udenafil (Dosing Study)
Results of a phase I/II multi-center investigation of udenafil in adolescents after fontan palliation. D. Goldberg, Am Heart J. 2017; 188:42-52.
The purpose of this study was to identify a safe dose of udenafil in teens with single ventricle heart disease. The participants were assigned to placebo or once-a-day or twice-a-day dosing, at different strengths. The 87.5 mg twice-a-day dosing regimen was well tolerated and showed the most consistent drug levels in the blood. This dose was used for the phase III FUEL (Fontan Udenafil Exercise Longitudinal) clinical trial.
Ventricular Volume Variability (Observational Study)
The Ventricular Volume Variability Study of the Pediatric Heart Network: Study design and impact of beat averaging and variable type on the reproducibility of echocardiographic measurements in children with chronic dilated cardiomyopathy. S. Colan, J Am Soc Echocardiogr 2012; 25:842-54.
Variability of M-mode versus two-dimensional echocardiography measurements in children with dilated cardiomyopathy. C. Lee, Pediatr Cardiol 2014; 35(4):658-67.
Predictors of disease progression in pediatric dilated cardiomyopathy. K. Molina, Circ Heart Fail 2013; 6(6): 1214–1222.
The reproducibility and absolute values of echocardiographic measurements of left ventricular size and function in children are algorithm dependent. R. Margossian, J Am Soc Echocardiogr 2015; 28(5):549-558.
Systolic-diastolic functional coupling in healthy children and in those with dilated cardiomyopathy. M. K. Friedberg, J Appl Physiol 2016; 120(11):1301-1318.
Reproducibility of Left Ventricular Dimension Versus Area Versus Volume Measurements in Pediatric Patients With Dilated Cardiomyopathy. E.S. Selamet Tierney, Circ Cardiovasc Imaging 2017; 10(11). pii: e006007.
There are multiple echocardiographic methods in common clinical use for measuring left ventricular size and function. Clinical management is often based on both individual evaluations and longitudinal trends, but it is generally not possible or practical to have the same personnel perform and interpret the echocardiographic assessment over time. Using data from the PHN's, Ventricular Volume Study in children with dilated cardiomyopathy, we investigated the impact of observer and sonographer variation on reproducibility of dimension, area, and volume methods to determine the most reproducible method for both individual and sequential evaluations. Compared to dimension and area methods, left ventricular measurements by volume method have the best reproducibility in settings where assessment is not performed by the same personnel. In an era in which left ventricular function is not assessed routinely by volume methods (i.e., ejection fraction) in many pediatric echocardiographic laboratories, this study provides important information on reproducibility that could impact long-term management of pediatric dilated cardiomyopathy.
Left Ventricular Dysfunction is Associated with Intraventricular Dyssynchrony by 3-Dimensional Echocardiography in Children. G. Baker, J Am Soc Enchocardiogr 2008; 21(3):230-233.
"Dyssynchrony" means that parts of the heart do not squeeze at the same time. This causes less efficient ejection of blood and contributes to heart failure. There is little data on dyssynchrony in children. This small study looked at whether 3-dimensional echocardiography (heart ultrasound) can be used to identify dyssynchrony in healthy children and children with poor heart function. The results show that 3D echocardiography can be used to look at dyssynchrony in children, and that patients with poorer heart function have more dyssynchrony.
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