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 diagnsis 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
Kevin P. Lally, MD
University of Texas Health Science Center at Houston
Department of Pediatric Surgery
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.
Kathleen Meskin, RN, BSN
Department of Neonatology
Medical College of Wisconsin
Email Us at Pamela.A.Lally@uth.tmc.edu