Genetics Research



Global CDH has partnered with the Columbia University Medical Center and their CDH Genetic Research Analyses Team in NYC. (More)



Global CDH has partnered with the Clinical Genetics Department at Columbia University Medical Center to assist in the DHREAMS initiative.  

DHREAMS is a national NIH funded study of CDH centered at Columbia University Medical Center. 

The scientific goal of the DHREAMS study at Columbia University Medical Center is to develop a better understanding of the causes of CDH.  This National Institute of Health (NIH)-funded research team is composed of health care providers and researchers across the country, coordinated at Columbia University Medical Center.  

DHREAMS is designed to identify specific alterations in genes that contribute to CDH through genetic analysis of biological samples from children with CDH and their family members.  The investigators hope that the information gained through our study will lead to a better understanding of the cause of CDH which will in turn lead to significant advances in the diagnosis, prognosis, prevention, and treatment of this disease. 

Multiple medical centers across the country are enrolling individuals. Please contact our research coordinator, Julia Wynn at jw2500@columbia.edu or (212) 305-6987 for more information about the study and how to participate.  When doing so, please mention Global CDH in the e-mail.

By contacting us, you are not obligated to enroll in the study.  We welcome all individuals who are interested in learning more about our research study. 


To visit the DHREAMS official website please visit www.cdhgenetics.com

Frequently Asked Questions: 

Who is eligible to enroll?

  • Children with a CDH and their parents
  • Individuals who are currently pregnant with a fetus (baby) who has been diagnosed with a CDH.

 

 

What is involved if my family enrolls in the study?

  • After the study is explained to you and all of your questions are answered, you will be asked to sign a consent form to participate in the study.
  • We will ask to collect biological samples (blood or saliva) from study participants. A kit can be sent by mail to collect saliva sample.  You DO NOT have to travel to be part of this study.
  • In some cases, if a child is having surgery we may ask for other types of biological samples including skin and diaphragm.  The collection of these samples will not affect the outcome of the surgery or increase the risk of the surgery.
  • We will collect information about your family history and medical history through an interview and by review of medical records. This information can be collected by a phone conversation with the family.
  • During the time your family is in the study, the study coordinator will be in contact with your family.  You are free to call the study coordinator at any time with any questions or concerns that you may have.

 

What are the benefits of participation in the study?

  • If we find information that may immediately affect the health of your child or your family and you agree to be contacted with this information, we will immediately report this information to your family and to your child’s doctor.
  • Your family’s participation will help us to better understand CDH and how to better diagnose, treat, and prevent the condition. While many families may not immediately benefit from participation in the study, the information gained through the study over the years will be important for your family in the future when want to have children of their own and other families affected by CDH in future generations.
  • There is no cost to participation in the study.