Current CDH Research Studies

Here you can post of current CDH research studies done by hospitals and/or research organizations. Please post hospital contact information as well as the type of CDH study being conducted.

*We reserve the right to remove any questionable posts!



DISCLAIMER: The information on all pages of this web site is for education only. It is not meant to be used in place of proper medical care and advice. CHERUBS does not encourage or discourage any medical treatments or procedures. Our purpose is to educate families and medical care providers so that they may make the best decisions for the patients' interests. You can not compare your child to other children born with CDH, they are all different. The opinions aired by members are not necessarily the views of all members, staff, or of CHERUBS.

Identifying Genes Which Cause CDH
Massachusetts General Hospital
Boston, Massachussetts
Drs. Patricia Donahue and Lewis Holmes
Contact: Meaghan Russell, Clinical Coordinator, at (617) 726-0828



Fryn's Syndrome
University of California
San Francisco, California
Contact: Anne Slavotinek, (415) 514-1783


Identifying Genes Which Cause CDH
Emergen Labs
Salt Lake City, Utah
Contact: Mary Meade, MMeade@emergen.com


Identifying Causes and Solutions of CDH
CHERUBS
Henderson, North Carolina
Don't forget to become a member and send in your CDH Research Survey

I found this on Vanderbilt Children's website:

The contact number is: 615-936-3413 or 1-877-338-8786
Center for Advanced Maternal Fetal Care

The Center for Advanced Maternal Fetal Care is actively recruiting patient for different research studies. Please call us if you have questions about these opportunities.

Congential Diaphragmatic Hernia (CDH)

Prospective and retrospective studies involving outcome predictors in infants w/ congenital diaphragmatic hernias (CDH) are currently underway. Measurements used to collect the data include lung size assessments using the lung to head ratio (LHR) and fetal MRI, as well as echocardiography for pulmonary artery size and function. The goal of this study is the improve the medical community's understanding of prenatal findings related to postnatal outcomes and develop a more standardized approach to the care of and counseling for these patients.

I will also add it to the links.


Kim Richards

Identifying Genes Which Cause CDH
Massachusetts General Hospital
Boston, Massachussetts
Drs. Patricia Donahue and Lewis Holmes
Contact: Meaghan Russell, Clinical Coordinator, at (617) 726-0828


Has anyone participated in this study? Chuck and I are rolling around the idea and are wondering what all it entails.

Genetics Lab at Baylor College of Medicine
We are searching for the genetic elements of CDH.
Daryl A. Scott MD PhD
One Baylor Plaza Ste. R831
Houston, TX 77030

Dr. Scott and researchers in his laboratory are working to identify the genes that cause CDH. A brief description of his research can be found at http://www.bcm.edu/genetics/facultyaz/scott.html. Families interested in learning more about participating in genetic studies aimed at identifying the genes that cause CDH can contact him via e-mail at dscott@bcm.tmc.edu or David Pearson, his research coordinator, at dp1@bcm.edu.

Can you participate in a study if our little one is not a survivor?

I emailed them and got an immediate response. It does not seem complicated. Just some blood work.

We are not currently doing any testing on parent DNA without a DNA sample from the child also, but there is a possibility of doing this in the future, we will notify everyone via this website if that happens.

We have had the opportunity recently to get some tissue samples from an autopsy that was performed over a year ago. We have not yet extracted DNA from it, so we are not sure what the quality of the DNA will be, or if it will be an avenue that we pursue in the future yet, but this may be an option for those who have angels that had an autopsy done to be able to participate in research.

David

Hello everyone,

Baylor has changed its website a little, so the new link to our lab information is http://www.bcm.edu/genetics/?pmid=11041. Please feel free to call or email any time if you have questions about our research. David

Thanks, David! And thank you and Daryl for being at the conference!!! We all learned so much and it was such a pleasure to have you there and meet you! I've heard nothing but compliments about how great you guys are! :)