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CDH Research Initiative     |     CDH Patient Registry     |     CDHi Medical Advisory Board     |     Current Studies     |     Hospital Accreditation     |     Grants     |     Publications


The following hospitals and organizations are currently conducting CDH research studies.

Each has their own set of guidelines. Some studies include blood work on all family members, some include oral swabs. Some studies also include grieving families. There is no cost to families to participate in research studies. We encourage members to participate in as much research as possible so that we can help save babies of the future and their families from suffering from Congenital Diaphragmatic Hernia.


Identifying Genes Which Cause CDH
Massachusetts General Hospital
Boston, Massachusetts
Patricia K. Donahoe, MD, Program Project Director
Marshall K. Bartlett Professor of Surgery, Harvard Medical School
Mauro Longoni, MD, Principal Investigator
Frances High, MD, PhD, Principal Investigator
Jennifer Lyu, MS – Program Coordinator
Boston Children’s Hospital
300 Longwood Ave, Fegan 3 (CDH mailbox)
Boston, MA 02115

Genetic Molecular Basis of CDH
Columbia University Medical Center
1150 St. Nicholas Avenue
New York, NY 10032

University of Utah
Diaphragm: Development, CDH, and Evolution
Department of Human Genetics
University of Utah
15 North 2030 East
Salt Lake City, UT 84112
Contact: Gabrielle Kardon
801-585-6184 office
801-585-7365 lab


RESPIRE program
Stem cell therapy for CDH lungs
The Hospital for Sick Children
Zani laboratories – Developmental & Stem Cell Biology (DSCB)
Peter Gilgan Centre for Research and Learning
686 Bay Street, Toronto, ON M5G 0A4, Canada


International CDH Patient Registry
CDH International
Wake Forest, North Carolina
Full patient information and family history, long term development and complications. A comprehensive look at Congenital Diaphragmatic Hernia, the registry collaborates with other registries and universities to better research CDH.

CDH Study Group
University of Texas, Houston
This study is the collection and collaboration of CDH hospitals and physicians. We encourage you to encourage your hospital to participate