Eric Chyn, Samantha Gold, Justine Hastings
The returns to early-life interventions for very low birth weight children
Journal of health economics
progress rare interstitial lung disease childhood usefully achieved systematic registrybased collection practicalities benefits participating pediatric lung registrychildeu project report clinical experiences pediatricians pediatric pulmonologists identify children rare lung diseases reported kids lung register parental consent clinical data imaging blood sent registry genetic analysis arranged desired completeness data peerreview process pediatric radiology possibly lung pathology clinical possibly genetic experts takes place interdisciplinary conference working diagnosis established communicated responsible physician via registry necessary discussed caserelated discussions assistance entering data provided registry followups performed annually registered physicians invited regular webbased case discussions significant questions answered scientific projects jointly published 110 publications date due voluntary additional work participants beyond clinical routine 1000 children rare lung diseases included registry biobank date deeper understanding clinical courses large cohorts rare diseases initial description new entities contributes better care children