Children's Interstitial Lung Disease Foundation
Patient-Partnered Collaboration
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 04/30/2025
Clinical
Disease Class
Respiratory diseases
Body Systems
Respiratory
Organs
Lungs
Lymph fluid, nodes, ducts, vessels
Known Genetic Link
Yes, there are both genes that cause the condition and genetic factors that contribute
causative_genes
ABCA3
COPA
NKX2-1
SFTPB (SP-B)
SFTPC (SP-C)
TTF1
contributory_genes
None specified / unknown
Type of Inheritance
Autosomal dominant
Autosomal recessive
De novo
Newborn Screening
No
Disease Mechanism(s)
Aberrant immune response
Autoimmune
Autoinflammatory disorder
Immune deficiencies
Pulmonary surfactant defect
Age of Onset
Adolescence (12-17)
Early childhood (age 1+-5)
Infancy (age 0-1)
Middle childhood (6-11)
Average Age at Diagnosis
Adolescence (12-17)
Early childhood (age 1+-5)
Infancy (age 0-1)
Middle childhood (6-11)
Life Expectancy
Adolescence (12-17)
Adulthood (age 18-64)
Early childhood (age 1+-5)
Infancy (age 0-1)
Middle childhood (6-11)
Affected Sex(es)
Female
Male
National Prevalence
1001-10000
Global Prevalence
10000+
National Incidence
Less than 10
Global Incidence
Less than 10
Symptoms / Phenotypes
breathing difficulties
failure to thrive
fatigue
hypoxemia
infection, lung
Biomarkers
None
Existing Therapies
None
Organizational & Research
Cell Lines
iPSCs
Cell Lines, Institution
Boston Children's Hospital
Cell Lines, Involvement
Consulted
Funded
Cell Lines, share
All our cell lines are freely available
Disease Model
Not specified / unknown
Disease Model, share
Unknown
Clinical Trial Role
Focus group
Recruitment and outreach, patients
Biobank, Institution
None
Center of Excellence, Institution
None
Registry
Yes, we have collaborated on a registry
Data Collected, Registry
Clinical data
Electronic health records/electronic medical records
Genetic data
Imaging data
Longitudinal natural history data
Medication usage
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, we have published formal guidelines in a peer-reviewed journal
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
Europe