The Congenital Diaphragmatic Hernia Study Group
This web site is designed as a resource for the Congenital Diaphragmatic Hernia Study Group. 
Comments about information on the web site and suggestions for future content may be directed to Pam Lally.
Information Forum:

The CDH Study Group has over 50 centers actively submitting data to the database. View and print out the latest data from the database of the CDH Study Group. Questions about HIPAA compliance and the proposed use of a Limited Data Set for the CDH database may be directed to Mary-Clare Day.

The CDH Study Group has published several articles using the data in the database and has recently given a number of presentations. 

Presentations from the October 2007 meeting on CDH held in Houston may be viewed.

Forms available for download (note several recent changes have been made to these forms):
For patients born on or before December 31, 2006:

Special formats (all electronic):

  • Form with dates as day/month/year (DD/MM/YYYY)
  • Form with dates as day/month/year (DD/MM/YYYY) and O2, CO2 units in kilopascals
  • Form with dates as year/month/day (YYYY/MM/DD)
  • Form with dates as year/month/day (YYYY/MM/DD) and O2, CO2 units in kilopascals
 For patients born on or after January 1, 2007:
  • Data entry form (for electronic submission*, by email to Pam Lally)
  • Data entry form (to be printed and mailed to Kevin Lally, MD at address below)
  • Instructions for these forms 
  • Master CDH defect diagrams (mini-views are included on the forms)- see one system for obtaining this data

Special formats (all electronic):

  • Form with dates as day/month/year (DD/MM/YYYY)
  • Form with dates as day/month/year (DD/MM/YYYY) and O2, CO2 units in kilopascals
  • Form with dates as year/month/day (YYYY/MM/DD)
  • Form with dates as year/month/day (YYYY/MM/DD) and O2, CO2 units in kilopascals
* This form opens as a Word document that can be filled out (check boxes, drop-down lists, and blank fields), saved (as for instance patient 2007-001), and then emailed to Pam Lally. If you would like the above files as templates (.dot files) to keep on your computer, please email Pam Lally

Mailing address:
          Kevin P. Lally, MD
          Suite 5.258 
          6431 Fannin Street
          Houston , TX 77030 
          FAX (713) 500-7296

One coordinator has devised a system to collect defect size (this may prove helpful for those working with larger groups of surgeons, nurse practitioners, and physician assistants):

  1. When a CDH baby is admitted to the NICU a CDH defect diagram (with the coordinator’s name and pager number) is placed in the chart. [At Wisconsin the diagram is placed in the progress notes. Other options might include the front of the chart.]
  2. The surgery PAs are notified (by email) about the admission and reminded to mark the form when the repair is done. [At Wisconsin these PAs rotate through the NICU on a weekly basis, so whoever is assigned to the NICU at that time will take care of marking the form or notifying the operating surgeon to do so.]
  3. The Wisconsin coordinator monitors the NICU census daily, so she knows when an infant with CDH is admitted. Since most are not repaired for a few days, this allows enough time to place the defect diagram in the chart and alert the surgery PAs.  

Courtesy of:
Kathleen Meskin, RN, BSN
Research Nurse
Department of Neonatology
Medical College of Wisconsin