Children's Interstitial Lung Disease Foundation

Patient-Partnered Collaboration
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Children’s Interstitial and Diffuse Lung Disease (chILD) is not a single disease. Instead, it is a group of rare lung diseases found in infants, children, and adolescents. There are different types of chILD that vary in their severity and in their long-term outcomes. In simplest terms, all types of chILD decrease a child’s ability to supply oxygen to their body.

Last updated May 2024

Clinical
Disease Class
Rare respiratory diseases
Rare systemic and rheumatological diseases of childhood
Body Systems
Respiratory
Organs
Lungs
Genes
None specified / unknown
Type of Inheritance
Autosomal recessive
Disease Mechanism(s)
Unknown
Age of Onset
Early childhood (age 1+-5)
Infancy (age 0-1)
Middle childhood (6-11)
Incidence
Less than 10
Prevalence
1001-10000
Symptoms / Phenotypes
breathing difficulties
failure to thrive
fatigue
hypoxemia
infection, lung
Biomarkers
None
Existing Therapies
Drugs approved for the symptoms
Other
· Treatments include hydroxycloracline, azithromycin, steroid infusions, albuterol
Organizational & Research
Cell Lines
Not specified / unknown
Cell Lines, location
Boston Children's Hospital
Cell Lines, share
Yes
Disease Model
Not specified / unknown
Disease Model, location
Boston Children's Hospital
Harvard Medical School
Disease Model, share
Yes
Clinical Trial Role
Focus group
Recruitment and outreach, patients
Biobank
None
Center of Excellence
Not specified
Registry
Yes, we have collaborated on a registry
Data Collected, Registry
Clinical data
Electronic health records/electronic medical records
Imaging data
Longitudinal natural history data
Patient contact info
Data Entered by, Registry
Clinicians
Platform, Registry
REDCap
Natural History Study
No, we do not have a natural history study and have no plans to create or collaborate on one
FDA Patient Listening Session
No
FDA Patient-Focused Drug Development (PFDD) Program
No
ICD Codes
No, we do not have any ICD codes
Diagnostic Guidelines
Yes
Clinical/Treatment Guidelines
Yes
Organizational Roles
No full-time staff
Science Advisory Board Policies
Yes, willing to share SAB policies
Research Network Policies
Does not have a CRN
Research Roadmap
We don't have a Research Roadmap
International Chapters
None
International Partners
Asia
Europe
Oceania
South America