Congenital Diaphragmatic Hernia Study Group

 

Information Forum

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 daysof age) BOCHDALEK hernias. Since its inception in 1995, more than 110 centers have participated (including more than 80 centers from 16 countries and 6 continents currently active – as of 7/2019), data on more than ten 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:

  1. An annual report (or upon request), benchmarking care compared to the registry as a whole, is provided to each center (see example below).
  2. 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.
  3. 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).
  4. We will archive your center data and can provide it to you upon request (at any time).
  5. 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 80 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_Main (Click Save As …, fill out form, save again and email to the CDHSG Team at the address below). v4_Main is the main data collection form.
  • Data collection form v4_USMRI: CDH_Data_Form_V4_USMRI addendum for collection of prenatal Ultrasound and/or MRI studies on patients with a prenatal diagnosis of CDH.
  • Instructions for completing form v4 (Main and USMRI) CDH_Data_Form_V4_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 data manager
Elisa Garcia, BSN, RN – CDH study group coordinator
Yvette Boyd – DUA / contracts specialist

Mailing address:
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