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The CDH Study Group: Past, Present, and Future.

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The Congenital Diaphragmatic Hernia Study Group (CDHSG) registry collects data from over 14,000 children globally. This international collaboration facilitates evidence-based research for congenital diaphragmatic hernia (CDH) patient care.

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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.