Congenital Diaphragmatic Hernia Study Group
Information for Hospitals, Institutions, Centers, and Physicians/ Research Teams
What is the CDH study group?
The Congenital Diaphragmatic Hernia (CDH) study group (CDHSG) is an international consortium of centers that prospectively collect and voluntarily contribute data about liveborn CDH patients they manage. These data are compiled to form a registry from which any participating center may utilize the dataset to answer specific clinical questions and monitor outcomes. We collect ALL (liveborn or live transferred in, repaired or not) NEONATAL (presenting by 30 days of age) BOCHDALEK hernias. Since its inception in 1995, more than 142 centers have participated (including more than 90 centers from 18 countries and 6 continents currently active – as of 08/2020), data on more than twelve thousand total children has been collected, and more than 50 manuscripts have been generated using registry data. This website is a great place to start when trying to learn about the CDHSG.
While most of the information necessary is available on this website, please don’t hesitate to simply reach out to our team: CDHSG@uth.tmc.edu
Why should my center join the CDHSG?
There are several key benefits to membership in the CDHSG:
- An annual report (or upon request), benchmarking care compared to the registry as a whole, is provided to each center (see example below).
- Any center that contributes more than 5 years of patients (which can be previous years or retrospective submissions) has access to the dataset for academic publication or presentation.
- Centers can query the dataset at any time to help answer specific and unique clinical questions for patient counseling or clinical guidance (examples provided below).
- We will archive your center data and can provide it to you upon request (at any time).
- The CDHSG is working toward new opportunities for collaboration and driving new avenues of research including fetal, long term follow-up, and standardized management. Working with the more than 90 centers that are currently members is a powerful resource for understanding and improving the care of these extremely complex patients.
- View and print out the most recent summary report (CDHSG_Report) from the database of the CDH Study Group.
- Questions about HIPAA compliance, the proposed use of a Limited Data Set for the CDH database, data use agreements, how to go about becoming a member, or anything else not addressed on this site may be directed to our CDHSG team at CDHSG@uth.tmc.edu
Forms available for download:
For patients born on or before December 31, 2014:
- If you have a patient to submit that was born on or before December 31, 2014, please email CDHSG@uth.tmc.edu for further instructions and data collection forms.
For patients born on/after January 1, 2015:
- Data collection form v4_Main: CDH_Data_Form_V4 (Click Save As …, fill out form, save again and email to the CDHSG Team at the address below).
- Instructions for completing form v4 CDH_Data_Form_V4_Information.
For patients born on/after January 1, 2021:
- Data collection form v5_Main: CDH_Data_Form_V5 (Click Save As …, fill out form, save again and email to the CDHSG Team at the address below).
- Instructions for completing form v5 CDH_Data_Form_V5_Information.
Master CDH defect diagrams (Diaphragm defects – smaller versions are contained in the data collection forms).
Email address: CDHSG@uth.tmc.edu
CDH Study Group team
Kevin Lally, MD, MS – Surgeon
Matthew Harting, MD, MS – Surgeon
Pam Lally, MD – Pediatrician and original Developer/Founder of the CDHSG/Database
Ashley Ebanks, FNP-C– CDH Study Group Coordinator and Data Manager
Yvette Boyd – DUA / Contracts Specialist
The CDHSG team
c/o Kevin P. Lally, MD
University of Texas Health Science Center at Houston
Department of Pediatric Surgery
6431 Fannin Street, Suite 5.258
Houston , TX 77030
FAX (713) 500-7296
Email Us at CDHSG@uth.tmc.edu
Information for CDH Patients and Families
A full list of active participating centers can be viewed here. This list is updated annually. For patients/families, reach out to your hospital if it is not on this list and ask them to participate in the CDH Study Group.