Overview of the ChILD Research Network: A roadmap for progress and success in defining rare diseases

  • Alicia M. Casey
  • , Robin R. Deterding
  • , Lisa R. Young
  • , Martha P. Fishman
  • , Elizabeth K. Fiorino
  • , Deborah R. Liptzin

Research output: Contribution to journalReview articlepeer-review

17 Scopus citations

Abstract

Children's interstitial and diffuse lung diseases are a diverse group of rare lung disorders that present in childhood with diffuse pulmonary infiltrates and respiratory signs and symptoms. Children with these disorders face high morbidity and mortality and their families must cope with overwhelming uncertainty. Physicians caring for these patients are challenged by a paucity of directed therapies, or even understanding of natural history. Through the establishment of the Children's Interstitial Lung Disease Foundation Research Network and the Children's Interstitial Lung Disease Foundation significant progress has been made through collaboration and research. This review outlines the past and current successes in the new and rapidly growing field of Children's Interstitial and Diffuse Lung Disease.

Original languageEnglish
Pages (from-to)1819-1827
Number of pages9
JournalPediatric Pulmonology
Volume55
Issue number7
DOIs
StatePublished - Jul 1 2020

Funding

To advance the care of children with chILD disorders, grant funding has been both essential and challenging. The chILD Foundation and partner organizations including the American Thoracic Society (ATS) Foundation, the chILD‐Lung Foundation UK, Pequenos Pulmones, and the Million Dollar Bike Ride have funded several research grants. To date, a total of eight projects have been funded through these foundations with over $400 000 granted for basic and translational chILD projects. Additionally, in 2012, the chILD Foundation was awarded funding through the Rare99X Project offered by the Rare Genomics Institute to be used for exome sequencing for several families that have multiple children affected by Neuroendocrine Hyperplasia of Infancy (NEHI) to look for common genetic mutations among NEHI patients. Additional funding for chILD‐specific projects has been provided by the National Institutes of Health, the National Organization of Rare Disorders, and other groups. Moving forward, more funding is crucial to understand and effectively treat chILD.

Funders
American Thoracic Society

    Keywords

    • interstitial lung disease (ILD)

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