View Full Version : Current CDH Research Studies

12-26-2006, 07:50 PM
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.

08-25-2007, 03:08 PM
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
Henderson, North Carolina
Don't forget to become a member and send in your CDH Research Survey

10-29-2007, 09:39 PM
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

12-31-2007, 09:04 PM
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.

Scott Lab
05-28-2009, 10:44 AM
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.

05-28-2009, 02:52 PM
Can you participate in a study if our little one is not a survivor?

05-28-2009, 04:31 PM
I emailed them and got an immediate response. It does not seem complicated. Just some blood work.

Scott Lab
06-22-2009, 10:47 AM
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.


Scott Lab
07-31-2009, 09:18 AM
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

Dawn Torrence Ireland
07-31-2009, 11:01 AM
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! :)

07-31-2009, 11:20 AM
Daryll and David, it was an honor to have both of you attend the conference! Thank you so much for your presentation.

To our members, if you can get an opportunity to watch a video of the presentation, I highly recommend it. You will learn a lot! The work that is being done on CDH research is amazing. If you would like to be part of the research, you can do that, too.

07-31-2009, 11:26 AM
Is the video up? Where can I find it?

Dawn Torrence Ireland
07-31-2009, 11:41 AM
Not yet, Nicolle, by next week it will be! :)

David, please send me the slide presentation. Thanks!

07-31-2009, 11:55 AM
cant wait! Thank you :)

07-31-2009, 02:56 PM
Can't wait for the video..

08-04-2009, 07:28 PM
Molecular Genetic Analysis of Congenital Diaphragmatic Hernia

Columbia University -Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)

Contact: Julia Wynn, MS 212-305-6987 jw2500@columbia.edu
Contact: Wendy Chung, MD, PhD 212-305-6731 wkc15@columbia.edu

08-04-2009, 07:57 PM
Rectal and Oral Omeprazole Treatment of Gastroesophageal Reflux in Infants With Esophageal Atresia or Congenital Diaphragmatic Hernia; A Pharmacodynamic and Pharmacokinetic Study.

Contact: P. Bestebreurtje, Pharm D +31355391398 pbestebreurtje@tergooiziekenhuizen.nl

08-04-2009, 07:59 PM
Chronic Sildenafil for Severe Diaphragmatic Hernia

Contact: Roberta L Keller, MD 415-514-3192 kellerr@peds.ucsf.edu
Contact: Samuel Hawgood, MBBS 415-476-9181 hawgoods@peds.ucsf.edu

08-04-2009, 08:01 PM
Percutaneous Endoscopic Tracheal Plug/Unplug for Congenital Diaphragmatic Hernia
Contact: Jody A Farrell, MSN, PNP 4154760445 fetus@ucsfmedctr.org
Contact: Tamara Ryan, ADN 4154760445 fetus@ucsfmedctr.org

08-04-2009, 08:03 PM
Randomized Control Trial of Fetoscopic Endoluminal Tracheal Occlusion With a Balloon Versus Expectant Management During Pregnancy in Fetuses With Left Sided Congenital Diaphragmatic Hernia and Moderate Pulmonary Hypoplasia.
Contact: Jan A Deprest, MD PhD +3216344215 Jan.Deprest@uzleuven.be
Contact: Tim Van Mieghem, MD +3216340829 Tim.VanMieghem@uzleuven.be

08-04-2009, 08:06 PM
Randomized Clinical Trial in Order to Assess the Effect of Fetoscopic Tracheal Balloon Occlusion on the Postnatal Disease Course in Neonates With Left Congenital Diaphragmatic Hernia - FDH-ECMO/BALLOON-TRIAL

Contact: Thomas Kohl, MD -49-228-2871-5942 thomas.kohl@ukb.uni-bonn.de
Contact: Thomas Schaible, MD -49-160-550-1023 t.schaible@t-online.de