The CDH Study Group: Past, Present, and Future

Area of Science:

• Pediatric Surgery
• Clinical Research
• Rare Disease Epidemiology

Background:

• The Congenital Diaphragmatic Hernia Study Group (CDHSG) is an international consortium established in 1995.
• It focuses on collecting and aggregating data from live-born congenital diaphragmatic hernia (CDH) patients managed at participating institutions.
• The initiative aims to create a comprehensive registry for clinical inquiry and outcome tracking.

Approach:

• The CDHSG registry aggregates data from 147 participating centers across 17 countries, with 95 currently active globally.
• Data collection has evolved since 1995, amassing information on over 14,000 children.
• The consortium enables healthcare professionals to formulate evidence-based hypotheses for complex diseases.

Key Points:

• Over 75 manuscripts have been published based on CDHSG registry data.
• The review emphasizes contributions and evidence generated by the CDHSG, particularly post-2014.
• The consortium facilitates generalizable conclusions for clinical inquiries regarding rare and complex conditions.

Conclusions:

• International, multicenter consortia like the CDHSG are vital for advancing the understanding and management of uncommon diseases.
• The CDHSG registry provides a robust platform for generating evidence to improve outcomes for congenital diaphragmatic hernia patients.
• Future directions will focus on continued data collection and research to address CDH.