Congenital Diaphragmatic Hernia Patient Registry

The CDH Patient Registry, established by CDH Research International (formerly CHERUBS and CDH International), is the world’s patient-led natural history database for Congenital Diaphragmatic Hernia (CDH). With over 6,400 participant cohorts from families worldwide, it documents the full spectrum of CDH — from prenatal diagnosis and acute interventions to long-term outcomes and quality of life.

A Living History Research Database.

In collaboration with the World Federation of Associations of Pediatric Surgeons (WOFAPS), our registry is hosted within Vanderbuilt University’s REDCap data collection software. Here, your information is secured with the highest protection available to the medical research community. We will never share or sell your information without your expressed consent to any entity, including WOFAPS or any medical entity. All of the data collected from you belongs to you and you have the right to revoke our use of your data at any point for any reason.

A Patient-Led Initiative for Transformative Insights For more than 25 years, families affected by CDH have driven this registry, providing unique parent-reported data on medical histories, treatments, complications, and developmental milestones. Unlike hospital-centric studies, it captures the complete patient journey, including factors often understudied, such as family perspectives and global disparities in care. This natural history approach helps researchers identify patterns, “coincidences,” and potential genetic/environmental causes — accelerating discoveries in prevention, therapies, and lifelong management.

Key Features and Benefits

Data Collection and Security: Submit information securely through our HIPAA- and GDPR-compliant online platform (hosted on REDCap). All data is confidential, with de-identified sharing only upon your permission.
Eligibility: Open to families of CDH non-survivors and survivors over 1 year of age — at no cost.
Research Impact: Complements data from the CDH Study Group and DHREAMS; supports partnerships with leading institutions (e.g., Columbia University, Massachusetts General Hospital, University of Utah), NIH, WHO, and pharmaceutical collaborators. Outcomes include enhanced understanding of survival rates (50–80% in high-resource settings), morbidity trends, and emerging gene therapies.
Global Reach: Provides the first comprehensive worldwide view of CDH, highlighting inequities (e.g., <1% survival in low/middle-income countries) and informing equitable care strategies.
Collaboration: Our registry compliments the CDH Study Group and DHREAMS registries, as well as the National Institutes of Health Gabriella Miller Fund Kid’s First Registry.

By participating, you contribute to breakthroughs that save lives and improve outcomes for future generations — while accessing resources tailored to your family’s needs.

Join the Registry Today Ready to make a difference? The registry is by invitation only and all participants are vetted through the CDH Family Forums. Join the forums for free at http://www.cdhboards.org Every quarter, research invitations are sent out to new members, or those now old enough to participate.

Additional Resources