Information Forum

The CDH Study Group has over 50 centers actively submitting data to the database.

  • View and print out the most recent report (CDHSG_Report) 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 Pam Lally.

Forms available for download:

For patients born on or before December 31, 2014:

  • Data collection form v3: CDH_Data_Form_V3 (Click Save As …, fill out form, save again and email to Pam Lally or mail to Dr. Kevin Lally at the address below)
  • Instructions for completing form v3 CDH_Data_Form_V3_Information.

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 Pam Lally or mail to Dr. Kevin Lally 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: Pam Lally

Mailing address:

Kevin P. Lally, MD
University of Texas Health Science Center at Houston
Department of Pediatric Surgery
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):

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.]

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.]

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