<clinical_study>
  <!-- This xml conforms to an XML Schema at:
    https://clinicaltrials.gov/ct2/html/images/info/public.xsd -->
  <required_header>
    <download_date>ClinicalTrials.gov processed this data on September 20, 2023</download_date>
    <link_text>Link to the current ClinicalTrials.gov record.</link_text>
    <url>https://clinicaltrials.gov/ct2/show/NCT01694940</url>
  </required_header>
  <id_info>
    <org_study_id>AAAF4597</org_study_id>
    <secondary_id>U54NS078059</secondary_id>
    <nct_id>NCT01694940</nct_id>
  </id_info>
  <brief_title>North American Mitochondrial Disease Consortium Patient Registry and Biorepository (NAMDC)</brief_title>
  <acronym>NAMDC</acronym>
  <official_title>North American Mitochondrial Disease Consortium Patient Registry and Biorepository (NAMDC)</official_title>
  <sponsors>
    <lead_sponsor>
      <agency>Columbia University</agency>
      <agency_class>Other</agency_class>
    </lead_sponsor>
    <collaborator>
      <agency>National Institute of Neurological Disorders and Stroke (NINDS)</agency>
      <agency_class>NIH</agency_class>
    </collaborator>
  </sponsors>
  <source>Columbia University</source>
  <oversight_info>
    <has_dmc>No</has_dmc>
  </oversight_info>
  <brief_summary>
    <textblock>
      The North American Mitochondrial Disease Consortium (NAMDC) maintains a patient contact&#xD;
      registry and tissue biorepository for patients with mitochondrial disorders.&#xD;
    </textblock>
  </brief_summary>
  <detailed_description>
    <textblock>
      Mitochondrial diseases comprise a group of relatively rare (~1 in 5000 adults) but very&#xD;
      serious genetic disorders. Mitochondria are often called the &quot;powerhouses of the cell&quot;&#xD;
      because they provide the energy our cells need to live. Mitochondria have their own DNA&#xD;
      (mtDNA), but they also rely on DNA from the nucleus (nDNA). Mitochondrial diseases are caused&#xD;
      by mutations in either mitochondrial or nuclear DNA that result in poorly functioning&#xD;
      mitochondria. This can cause a variety of symptoms including muscle weakness, seizures,&#xD;
      mental retardation, dementia, hearing loss, blindness, strokes, diabetes, and premature&#xD;
      death. Most mitochondrial diseases are progressive, and we are unable to cure most of these&#xD;
      diseases with currently available treatments.&#xD;
&#xD;
      Research into mitochondrial diseases has been hampered by the low frequency of these&#xD;
      disorders and by under-diagnosis by clinicians. This has hindered patient recruitment for&#xD;
      research studies and clinical trials. The North American Mitochondrial Disease Consortium&#xD;
      (NAMDC) was established to help surmount these issues. Led jointly by Drs. Michio Hirano and&#xD;
      Salvatore DiMauro, NAMDC is a consortium of several clinicians and researchers with an&#xD;
      interest in mitochondrial disease research in the United States and Canada.&#xD;
&#xD;
      By creating a mechanism for the sharing of patient samples with researchers, data and patient&#xD;
      contact information, NAMDC will make it easier to conduct clinical and basic laboratory&#xD;
      research.&#xD;
&#xD;
      Patient information will be shared through the use of the &quot;Patient Data Registry,&quot; a&#xD;
      specially-designed database, and patient tissue samples will be shared through the use of the&#xD;
      &quot;Patient Sample Biorepository&quot;, a storage facility in which patient-derived biological&#xD;
      samples will be maintained. The Registry and the Biorepository will hopefully accelerate&#xD;
      progress in the understanding and treatment of mitochondrial disease.&#xD;
&#xD;
      Patients can enroll at any of the NAMDC member sites. A web-based remote enrollment is also&#xD;
      available at www.namdc.org for eligible patients who reside far from any of the NAMDC&#xD;
      participating sites.&#xD;
    </textblock>
  </detailed_description>
  <overall_status>Recruiting</overall_status>
  <start_date type="Actual">December 2010</start_date>
  <completion_date type="Anticipated">December 2025</completion_date>
  <primary_completion_date type="Anticipated">December 2025</primary_completion_date>
  <study_type>Observational</study_type>
  <has_expanded_access>No</has_expanded_access>
  <study_design_info>
    <observational_model>Cohort</observational_model>
    <time_perspective>Prospective</time_perspective>
  </study_design_info>
  <primary_outcome>
    <measure>There is no primary outcome measure for this study</measure>
    <time_frame>end of study</time_frame>
    <description>This is a registry protocol and therefore there is no primary outcome measure for this study.</description>
  </primary_outcome>
  <number_of_groups>1</number_of_groups>
  <enrollment type="Anticipated">1000</enrollment>
  <condition>Mitochondrial Disorders</condition>
  <condition>Mitochondrial Genetic Disorders</condition>
  <condition>Mitochondrial Diseases</condition>
  <condition>Disorder of Mitochondrial Respiratory Chain Complexes</condition>
  <condition>Deletion and Duplication of Mitochondrial DNA</condition>
  <arm_group>
    <arm_group_label>Mitochondrial Disease Patients</arm_group_label>
    <description>Patients with possible or known mitochondrial disorders. Patients who are known carriers of mitochondrial or nuclear DNA mutations involved in mitochondrial function.</description>
  </arm_group>
  <biospec_retention>Samples With DNA</biospec_retention>
  <biospec_descr>
    <textblock>
      Any type of tissue sample can be stored in the biorepository.&#xD;
    </textblock>
  </biospec_descr>
  <eligibility>
    <study_pop>
      <textblock>
        Patients with known mitochondrial disorders. People at risk of carrying a mitochondrial DNA&#xD;
        mutation Patients with abnormal mitochondrial function&#xD;
      </textblock>
    </study_pop>
    <sampling_method>Non-Probability Sample</sampling_method>
    <criteria>
      <textblock>
        Inclusion Criteria:&#xD;
&#xD;
          -  Patients diagnosed with or suspected to have a mitochondrial disorder&#xD;
&#xD;
          -  Adult carriers of known mitochondrial DNA mutations&#xD;
&#xD;
          -  Patients with laboratory analysis indicative of a mitochondrial disorder.&#xD;
&#xD;
          -  Medical information and tissue samples are also accepted from deceased individuals who&#xD;
             fulfill the above criteria.&#xD;
&#xD;
        Exclusion Criteria:&#xD;
&#xD;
          -  Patients not suspected of having a mitochondrial disorder&#xD;
&#xD;
          -  Patients not suspected of carrying a mitochondrial DNA or nuclear DNA mutation that&#xD;
             affects mitochondrial function.&#xD;
      </textblock>
    </criteria>
    <gender>All</gender>
    <minimum_age>N/A</minimum_age>
    <maximum_age>N/A</maximum_age>
    <healthy_volunteers>Accepts Healthy Volunteers</healthy_volunteers>
  </eligibility>
  <overall_official>
    <last_name>Michio Hirano, MD</last_name>
    <role>Study Director</role>
    <affiliation>Columbia University</affiliation>
  </overall_official>
  <overall_contact>
    <last_name>Michio Hirano, MD</last_name>
    <phone>12123051048</phone>
    <email>NAMDC@columbia.edu</email>
  </overall_contact>
  <overall_contact_backup>
    <last_name>Kristin Engelstad, MS</last_name>
    <phone>12123056834</phone>
    <email>NAMDC@columbia.edu</email>
  </overall_contact_backup>
  <location>
    <facility>
      <name>University of California San Diego</name>
      <address>
        <city>San Diego</city>
        <state>California</state>
        <zip>92103</zip>
        <country>United States</country>
      </address>
    </facility>
    <status>Recruiting</status>
    <contact>
      <last_name>Richard Hass, MD</last_name>
      <phone>858-822-6700</phone>
      <email>rhass@ucsd.edu</email>
    </contact>
    <contact_backup>
      <last_name>Robert Naviaux, MD</last_name>
      <phone>16195432904</phone>
      <email>naviaux@ucsd.edu</email>
    </contact_backup>
    <investigator>
      <last_name>Robert Naviaux, MD</last_name>
      <role>Principal Investigator</role>
    </investigator>
    <investigator>
      <last_name>Richard Haas, MD PhD</last_name>
      <role>Principal Investigator</role>
    </investigator>
  </location>
  <location>
    <facility>
      <name>Lucile Packard Children's Hospital</name>
      <address>
        <city>Stanford</city>
        <state>California</state>
        <zip>94305</zip>
        <country>United States</country>
      </address>
    </facility>
    <status>Recruiting</status>
    <contact>
      <last_name>Gregory Enns, MD</last_name>
      <phone>650-723-6858</phone>
    </contact>
    <investigator>
      <last_name>Gregory Enns, MD</last_name>
      <role>Principal Investigator</role>
    </investigator>
  </location>
  <location>
    <facility>
      <name>Children's Hospital of Colorado</name>
      <address>
        <city>Aurora</city>
        <state>Colorado</state>
        <zip>80045</zip>
        <country>United States</country>
      </address>
    </facility>
    <status>Recruiting</status>
    <contact>
      <last_name>Johan Van Hove, MD PhD MBA</last_name>
      <phone>303-724-2351</phone>
    </contact>
    <contact_backup>
      <last_name>Abigail Collins, MD</last_name>
      <phone>7207776895</phone>
      <email>abibail.collins@ucdenver.edu</email>
    </contact_backup>
    <investigator>
      <last_name>Johan Van Hove, MD PhD MBA</last_name>
      <role>Principal Investigator</role>
    </investigator>
    <investigator>
      <last_name>Abigail Collins, MD</last_name>
      <role>Principal Investigator</role>
    </investigator>
  </location>
  <location>
    <facility>
      <name>Children's National Medical Center</name>
      <address>
        <city>Washington</city>
        <state>District of Columbia</state>
        <zip>20010</zip>
        <country>United States</country>
      </address>
    </facility>
    <status>Recruiting</status>
    <contact>
      <last_name>Andrea Gropman, MD</last_name>
      <phone>202-476-3511</phone>
      <email>agropman@cnmc.org</email>
    </contact>
    <investigator>
      <last_name>Andrea Gropman, MD</last_name>
      <role>Principal Investigator</role>
    </investigator>
  </location>
  <location>
    <facility>
      <name>University of Florida</name>
      <address>
        <city>Gainesville</city>
        <state>Florida</state>
        <zip>32610</zip>
        <country>United States</country>
      </address>
    </facility>
    <status>Recruiting</status>
    <contact>
      <last_name>Peter Stacpole, MD</last_name>
      <phone>352-265-8909</phone>
      <email>stacpool@gcrc.ufl.edu</email>
    </contact>
    <investigator>
      <last_name>Peter Stacpole, MD</last_name>
      <role>Principal Investigator</role>
    </investigator>
  </location>
  <location>
    <facility>
      <name>Massachusetts General Hospital</name>
      <address>
        <city>Boston</city>
        <state>Massachusetts</state>
        <zip>02115</zip>
        <country>United States</country>
      </address>
    </facility>
    <status>Recruiting</status>
    <contact>
      <last_name>Amel Karaa, MD</last_name>
      <phone>617-355-6117</phone>
      <email>akaraa@partners.org</email>
    </contact>
    <investigator>
      <last_name>Amel Karaa, MD</last_name>
      <role>Principal Investigator</role>
    </investigator>
  </location>
  <location>
    <facility>
      <name>Mayo Clinic</name>
      <address>
        <city>Rochester</city>
        <state>Minnesota</state>
        <zip>55902</zip>
        <country>United States</country>
      </address>
    </facility>
    <status>Recruiting</status>
    <contact>
      <last_name>Ralitza Garivolova, MD</last_name>
      <phone>507-284-2511</phone>
      <email>gavrilova.ralitza@mayo.edu</email>
    </contact>
    <investigator>
      <last_name>Ralitza Gavrilova, MD</last_name>
      <role>Principal Investigator</role>
    </investigator>
  </location>
  <location>
    <facility>
      <name>Columbia University Medical Center</name>
      <address>
        <city>New York</city>
        <state>New York</state>
        <zip>10032</zip>
        <country>United States</country>
      </address>
    </facility>
    <status>Recruiting</status>
    <contact>
      <last_name>Michio Hirano, MD</last_name>
      <phone>212-305-1048</phone>
      <email>namdc@columbia.edu</email>
    </contact>
    <contact_backup>
      <last_name>Salvatore DiMauro, MD</last_name>
    </contact_backup>
    <investigator>
      <last_name>Michio Hirano, MD</last_name>
      <role>Principal Investigator</role>
    </investigator>
    <investigator>
      <last_name>Salvatore Dimauro, MD</last_name>
      <role>Principal Investigator</role>
    </investigator>
  </location>
  <location>
    <facility>
      <name>Virtual Site (Remote enrollment)</name>
      <address>
        <city>New York</city>
        <state>New York</state>
        <zip>10032</zip>
        <country>United States</country>
      </address>
    </facility>
    <status>Recruiting</status>
    <contact>
      <last_name>Xiomara Q Rosales, MD</last_name>
      <phone>212-342-2336</phone>
      <email>xr2126@cumc.columbia.edu</email>
    </contact>
    <contact_backup>
      <last_name>Kristin Engelstad, MS</last_name>
      <phone>2123056834</phone>
      <email>ke4@columbia.edu</email>
    </contact_backup>
    <investigator>
      <last_name>Xiomara Q Rosales, MD</last_name>
      <role>Sub-Investigator</role>
    </investigator>
  </location>
  <location>
    <facility>
      <name>Akron Children's Hospital</name>
      <address>
        <city>Akron</city>
        <state>Ohio</state>
        <zip>44308</zip>
        <country>United States</country>
      </address>
    </facility>
    <status>Recruiting</status>
    <contact>
      <last_name>Bruce Cohen, MD</last_name>
      <phone>330-543-6048</phone>
      <email>bcohen@chmca.org</email>
    </contact>
    <investigator>
      <last_name>Bruce Cohen, MD</last_name>
      <role>Principal Investigator</role>
    </investigator>
  </location>
  <location>
    <facility>
      <name>Case Western Reserve University</name>
      <address>
        <city>Cleveland</city>
        <state>Ohio</state>
        <zip>44106</zip>
        <country>United States</country>
      </address>
    </facility>
    <status>Recruiting</status>
    <contact>
      <last_name>Charles Hoppel, MD</last_name>
      <phone>216-368-3147</phone>
      <email>charles.hoppel@case.edu</email>
    </contact>
    <contact_backup>
      <last_name>Douglas Kerr, MD</last_name>
      <phone>12168443661</phone>
      <email>douglas.kerr@case.edu</email>
    </contact_backup>
    <investigator>
      <last_name>Charles Hoppel, MD</last_name>
      <role>Principal Investigator</role>
    </investigator>
    <investigator>
      <last_name>Douglas Kerr, MD PhD</last_name>
      <role>Principal Investigator</role>
    </investigator>
  </location>
  <location>
    <facility>
      <name>Cleveland Clinic</name>
      <address>
        <city>Cleveland</city>
        <state>Ohio</state>
        <zip>44195</zip>
        <country>United States</country>
      </address>
    </facility>
    <status>Recruiting</status>
    <contact>
      <last_name>Sumit Parikh, MD</last_name>
      <phone>216-444-1994</phone>
      <email>parikhs@ccf.org</email>
    </contact>
    <investigator>
      <last_name>Sumit Parikh, MD</last_name>
      <role>Principal Investigator</role>
    </investigator>
  </location>
  <location>
    <facility>
      <name>The Children's Hospital of Philadelphia</name>
      <address>
        <city>Philadelphia</city>
        <state>Pennsylvania</state>
        <zip>19104</zip>
        <country>United States</country>
      </address>
    </facility>
    <status>Recruiting</status>
    <contact>
      <last_name>Marni J Falk, MD</last_name>
      <phone>215-590-4564</phone>
      <email>falkm@email.chop.edu</email>
    </contact>
    <investigator>
      <last_name>Marni J Falk, MD</last_name>
      <role>Principal Investigator</role>
    </investigator>
  </location>
  <location>
    <facility>
      <name>Children's Hospital of Pittsburgh</name>
      <address>
        <city>Pittsburgh</city>
        <state>Pennsylvania</state>
        <zip>15224</zip>
        <country>United States</country>
      </address>
    </facility>
    <status>Recruiting</status>
    <contact>
      <last_name>Amy Goldstein, MD</last_name>
      <phone>412-692-5520</phone>
    </contact>
    <investigator>
      <last_name>Amy Goldstein, MD</last_name>
      <role>Principal Investigator</role>
    </investigator>
  </location>
  <location>
    <facility>
      <name>Baylor College of Medicine</name>
      <address>
        <city>Houston</city>
        <state>Texas</state>
        <zip>77030</zip>
        <country>United States</country>
      </address>
    </facility>
    <status>Recruiting</status>
    <contact>
      <last_name>William Craigen, MD</last_name>
      <phone>713-798-8305</phone>
      <email>wcraigen@bcm.edu</email>
    </contact>
    <contact_backup>
      <last_name>Fernando Scaglia, MD</last_name>
      <phone>18328224280</phone>
      <email>fscaglia@bcm.tmc.edu</email>
    </contact_backup>
    <investigator>
      <last_name>William Craigen, MD</last_name>
      <role>Principal Investigator</role>
    </investigator>
    <investigator>
      <last_name>Fernando Scaglia, MD</last_name>
      <role>Principal Investigator</role>
    </investigator>
  </location>
  <location>
    <facility>
      <name>Seattle Children's Hospital and Regional Medical Center</name>
      <address>
        <city>Seattle</city>
        <state>Washington</state>
        <zip>98105</zip>
        <country>United States</country>
      </address>
    </facility>
    <status>Recruiting</status>
    <contact>
      <last_name>Russell Saneto, MD</last_name>
      <phone>206-987-2100</phone>
      <phone_ext>4017</phone_ext>
      <email>russ.saneto@seattlechildrens.org</email>
    </contact>
    <investigator>
      <last_name>Russell Saneto, DO PhD</last_name>
      <role>Principal Investigator</role>
    </investigator>
  </location>
  <location>
    <facility>
      <name>McMaster University</name>
      <address>
        <city>Hamilton</city>
        <state>Ontario</state>
        <zip>ON L8N 3Z5</zip>
        <country>Canada</country>
      </address>
    </facility>
    <status>Recruiting</status>
    <contact>
      <last_name>Mark Tarnopolsky, MD</last_name>
      <phone>19055212100</phone>
      <phone_ext>75226</phone_ext>
      <email>tarnopol@univmail.cis.mcmaster.ca</email>
    </contact>
    <investigator>
      <last_name>Mark Tarnopolsky, MD</last_name>
      <role>Principal Investigator</role>
    </investigator>
  </location>
  <location_countries>
    <country>Canada</country>
    <country>United States</country>
  </location_countries>
  <link>
    <url>https://www1.rarediseasesnetwork.org/cms/NAMDC</url>
    <description>Rare Disease Clinical Research Network NAMDC Home Page</description>
  </link>
  <verification_date>July 2022</verification_date>
  <study_first_submitted>September 25, 2012</study_first_submitted>
  <study_first_submitted_qc>September 25, 2012</study_first_submitted_qc>
  <study_first_posted type="Estimate">September 27, 2012</study_first_posted>
  <last_update_submitted>July 28, 2022</last_update_submitted>
  <last_update_submitted_qc>July 28, 2022</last_update_submitted_qc>
  <last_update_posted type="Actual">August 1, 2022</last_update_posted>
  <responsible_party>
    <responsible_party_type>Principal Investigator</responsible_party_type>
    <investigator_affiliation>Columbia University</investigator_affiliation>
    <investigator_full_name>Michio Hirano, MD</investigator_full_name>
    <investigator_title>Professor of Neurology</investigator_title>
  </responsible_party>
  <keyword>mitochondrial disorders</keyword>
  <keyword>Mito Disease</keyword>
  <keyword>Mitochondria</keyword>
  <keyword>Mitochondrial disease</keyword>
  <keyword>Mitochondrial myopathy, encephalopathy, lactic acidosis, and stroke (MELAS) Syndrome</keyword>
  <keyword>Myoclonic Epilepsy with Ragged Red Fibers (MERRF)</keyword>
  <keyword>Leber Hereditary Optic Neuropathy (LHON)</keyword>
  <keyword>Leigh Syndrome</keyword>
  <keyword>Neuropathy, ataxia, and retinitis pigmentosa (NARP)</keyword>
  <keyword>Kearns Sayre syndrome</keyword>
  <keyword>Alpers Huttenlocher</keyword>
  <keyword>Pearson</keyword>
  <keyword>Mitochondrial Neurogastrointestinal Encephalopathy (MNGIE)</keyword>
  <keyword>Barth Syndrome</keyword>
  <keyword>Coenzyme Q (CoQ) Deficiency</keyword>
  <keyword>Chronic progressive external ophthalmoplegia (CPEO)</keyword>
  <keyword>DAD</keyword>
  <keyword>Diabetes and Deafness</keyword>
  <keyword>Encephalopathy</keyword>
  <keyword>Encephalomyopathy</keyword>
  <keyword>Familial Bilateral Striatal Necrosis (FBSN)</keyword>
  <keyword>Hepatocerebral Disease</keyword>
  <keyword>Leukoencephalopathy</keyword>
  <keyword>Maternally Inherited Leigh Syndrome (MILS)</keyword>
  <keyword>Complex I Deficiency</keyword>
  <keyword>Complex II Deficiency</keyword>
  <keyword>Complex III Deficiency</keyword>
  <keyword>Complex IV Deficiency</keyword>
  <keyword>Complex V Deficiency</keyword>
  <keyword>mitochondrial DNA depletion syndrome</keyword>
  <keyword>mtDNA depletion syndrome</keyword>
  <condition_browse>
    <!-- CAUTION:  The following MeSH terms are assigned with an imperfect algorithm            -->
    <mesh_term>Genetic Diseases, Inborn</mesh_term>
    <mesh_term>Mitochondrial Diseases</mesh_term>
  </condition_browse>
  <patient_data>
    <sharing_ipd>Yes</sharing_ipd>
    <ipd_description>Anonymized participant data is available upon request and approval by the NAMDC Data Use Committee.</ipd_description>
  </patient_data>
  <!-- Results have not yet been posted for this study                                          -->
</clinical_study>


download date: ClinicalTrials.gov processed this data on September 20, 2023
link text: Link to the current ClinicalTrials.gov record.
url: https://clinicaltrials.gov/ct2/show/NCT01694940
org study id: AAAF4597
secondary id: U54NS078059
nct id: NCT01694940
lead sponsor: 
collaborator: 
has dmc: No
The North American Mitochondrial Disease Consortium (NAMDC) maintains a patient contact
      registry and tissue biorepository for patients with mitochondrial disorders.
Mitochondrial diseases comprise a group of relatively rare (~1 in 5000 adults) but very
      serious genetic disorders. Mitochondria are often called the "powerhouses of the cell"
      because they provide the energy our cells need to live. Mitochondria have their own DNA
      (mtDNA), but they also rely on DNA from the nucleus (nDNA). Mitochondrial diseases are caused
      by mutations in either mitochondrial or nuclear DNA that result in poorly functioning
      mitochondria. This can cause a variety of symptoms including muscle weakness, seizures,
      mental retardation, dementia, hearing loss, blindness, strokes, diabetes, and premature
      death. Most mitochondrial diseases are progressive, and we are unable to cure most of these
      diseases with currently available treatments.

      Research into mitochondrial diseases has been hampered by the low frequency of these
      disorders and by under-diagnosis by clinicians. This has hindered patient recruitment for
      research studies and clinical trials. The North American Mitochondrial Disease Consortium
      (NAMDC) was established to help surmount these issues. Led jointly by Drs. Michio Hirano and
      Salvatore DiMauro, NAMDC is a consortium of several clinicians and researchers with an
      interest in mitochondrial disease research in the United States and Canada.

      By creating a mechanism for the sharing of patient samples with researchers, data and patient
      contact information, NAMDC will make it easier to conduct clinical and basic laboratory
      research.

      Patient information will be shared through the use of the "Patient Data Registry," a
      specially-designed database, and patient tissue samples will be shared through the use of the
      "Patient Sample Biorepository", a storage facility in which patient-derived biological
      samples will be maintained. The Registry and the Biorepository will hopefully accelerate
      progress in the understanding and treatment of mitochondrial disease.

      Patients can enroll at any of the NAMDC member sites. A web-based remote enrollment is also
      available at www.namdc.org for eligible patients who reside far from any of the NAMDC
      participating sites.
observational model: Cohort
time perspective: Prospective
measure: There is no primary outcome measure for this study
time frame: end of study
description: This is a registry protocol and therefore there is no primary outcome measure for this study.
arm group label: Mitochondrial Disease Patients
description: Patients with possible or known mitochondrial disorders. Patients who are known carriers of mitochondrial or nuclear DNA mutations involved in mitochondrial function.
Any type of tissue sample can be stored in the biorepository.
study pop: 
sampling method: Non-Probability Sample
criteria: 
gender: All
minimum age: N/A
maximum age: N/A
healthy volunteers: Accepts Healthy Volunteers
last name: Michio Hirano, MD
role: Study Director
affiliation: Columbia University
last name: Michio Hirano, MD
phone: 12123051048
email: NAMDC@columbia.edu
last name: Kristin Engelstad, MS
phone: 12123056834
email: NAMDC@columbia.edu
facility: 
status: Recruiting
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country: Canada
country: United States
url: https://www1.rarediseasesnetwork.org/cms/NAMDC
description: Rare Disease Clinical Research Network NAMDC Home Page
responsible party type: Principal Investigator
investigator affiliation: Columbia University
investigator full name: Michio Hirano, MD
investigator title: Professor of Neurology
mesh term: Genetic Diseases, Inborn
mesh term: Mitochondrial Diseases
sharing ipd: Yes
ipd description: Anonymized participant data is available upon request and approval by the NAMDC Data Use Committee.