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The following hospitals and organizations are actively conducting CDH research studies, each with their own specific guidelines. These studies encompass a range of approaches, including blood work on all family members, oral swabs, and even involving grieving families. Importantly, participation in these research studies is entirely cost-free for families.

We earnestly encourage our members to participate in as many research opportunities as possible. By doing so, we collectively contribute to advancing medical knowledge, with the ultimate goal of saving the lives of future babies and alleviating the burden of Congenital Diaphragmatic Hernia for their families

  1. The research study “Identifying Genes Which Cause CDH” is being conducted by Massachusetts General Hospital, located in Boston, Massachusetts. The program is led by Patricia K. Donahoe, MD, who holds the position of Marshall K. Bartlett Professor of Surgery at Harvard Medical School. The study’s Principal Investigators are Mauro Longoni, MD, and Frances High, MD, PhD. The Program Coordinator for this study is Jennifer Lyu, MS.

For inquiries or participation in the research study, interested parties can contact the team at the following information:

  • Phone: 617-355-8780
  • Email:

The study’s physical location for correspondence is at Boston Children’s Hospital, situated at 300 Longwood Ave, Fegan 3 (CDH mailbox), Boston, MA 02115.

2. Genetic Molecular Basis of Congenital Diaphragmatic Hernia (CDH)

Columbia University Medical Center
1150 St. Nicholas Avenue
New York, NY 10032

Contact Information:

The DHREAMS (Diaphragmatic Hernia Research & Exploration; Advancing Molecular Science) Study, located at Columbia University Medical Center in New York City, focuses on uncovering the genetic molecular basis of Congenital Diaphragmatic Hernia (CDH).

For inquiries or further information, you can reach out to the study team using the provided contact details:

Your participation and support in this research endeavor are instrumental in advancing our knowledge of CDH and potentially paving the way for improved diagnosis and treatment options. Thank you for your interest in contributing to this vital research study.

3. Research Study: Diaphragm: Development, CDH, and Evolution

University of Utah
Department of Human Genetics
15 North 2030 East
Salt Lake City, UT 84112

Contact: Gabrielle Kardon

The University of Utah’s Department of Human Genetics is conducting a research study titled “Diaphragm: Development, CDH, and Evolution.” Led by Gabrielle Kardon, the study aims to explore various aspects of the diaphragm, including its development, Congenital Diaphragmatic Hernia (CDH), and evolutionary aspects.

For any inquiries or to participate in the study, please contact Gabrielle Kardon using the provided contact details:

Your involvement in this research study is invaluable in furthering our understanding of the diaphragm’s complexities and its association with CDH. Thank you for your interest in contributing to this important area of research at the University of Utah.

4. 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

The Hospital for Sick Children’s Zani Laboratories, specializing in Developmental & Stem Cell Biology (DSCB), spearheads the RESPIRE Program. This groundbreaking initiative focuses on exploring stem cell therapy for Congenital Diaphragmatic Hernia (CDH) lungs.

For more information or inquiries about the RESPIRE Program and its stem cell research for CDH lungs, please contact:

Peter Gilgan Centre for Research and Learning
686 Bay Street, Toronto, ON M5G 0A4, Canada

Kindly note that the provided contact information is for research purposes and not for medical emergencies. Your involvement and support in this innovative program are instrumental in advancing stem cell therapy’s potential for improving CDH lung outcomes. We appreciate your interest in contributing to this critical area of research at The Hospital for Sick Children in Toronto.

5. International CDH Patient Registry

CDH International
Wake Forest, North Carolina

The International CDH Patient Registry, managed by CDH International, is a comprehensive repository that gathers full patient information, family history, long-term development, and complications related to Congenital Diaphragmatic Hernia (CDH). This valuable registry provides researchers with a holistic perspective of CDH, enabling a better understanding of this condition and its impact on patients and their families.

Through collaboration with other registries and universities, the International CDH Patient Registry plays a crucial role in enhancing CDH research efforts. By pooling resources and knowledge, this registry aims to advance our understanding of CDH, contribute to medical advancements, and improve the quality of life for those affected by this condition.

Researchers and medical professionals can access the registry’s data to gain insights into CDH’s complexities and identify potential avenues for further study and treatment advancements. The International CDH Patient Registry stands as a significant initiative in the pursuit of better healthcare outcomes for CDH patients worldwide.

6. CDH Study Group

University of Texas, Houston

The CDH Study Group, based at the University of Texas in Houston, is a collaborative effort involving CDH hospitals and physicians. This study aims to collect comprehensive data and insights on Congenital Diaphragmatic Hernia (CDH) from various medical institutions.

We encourage and invite hospitals to participate in this vital research initiative. By joining forces with the CDH Study Group, medical facilities can contribute to a collective effort to advance our understanding of CDH, explore innovative treatment approaches, and improve outcomes for affected individuals.

Your hospital’s participation in this study can make a significant impact on the knowledge and care provided for CDH patients worldwide. Together, we can enhance medical knowledge, share best practices, and ultimately, improve the lives of those living with Congenital Diaphragmatic Hernia.

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