CDH Research Studies

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

Each has their own set of guidelines. Some ask for data. 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.

International CDH Patient Registry – For All CDH Patients (non-survivors and survivors over 1 year old)

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.

Fully HIPAA and GDPR compliant, your data is completely confidential, safe and anonymous.

You must be a registered member of CDH International to participate with a survivor over 1 year old or a non-survivor.

The registry questionnaire is located at

Quality of Life of Adults Born with Congenital Diaphragmatic Hernia – For Survivors 13 years and older

A joint venture between CDH International andThe Hospital for Sick Children Zani Laboratories in Toronto, Canada.

You must be a registered member of CDH International to participate and be a survivor over 1 year old.

The study questionnaire is located at

Congenital Diaphragmatic Hernia (CDH) and COVID-19 – For All Patients Alive Between February, 2020 and Now

A collaboration between Fondazione IRCCS Ca’ Granda, Ospedale Maggiore Policlinico Milan (Italy), Associazione Fa.B.E.D. Famiglie di Bambini con Ernia Diaframmatica and CDH International into the effects of COVID-19 on Congenital Diaphragmatic Hernia patients.

You must be a registered member of CDH International to participate and been alive during the COVID-19 pandemic (between February, 2020 and now).

The study questionnaire is located at

Genetic CDH Studies – All Survivors and Those Non-Survivors With Genetic Samples (blood or tissue)

Genetic Molecular Basis of CDH
DHREAMS Study / CARE For Kids
Columbia University Medical Center
1150 St. Nicholas Avenue
New York, NY 10032

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
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

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

Stem Cell Therapies – In Utero only

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

Recommended Articles

Translate »