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CDH UK partners with the DHREAMS Study

DHREAMS - what does the Acronym stand for?

Diaphragmatic Hernia Research Exploration Advancing Molecular Science

Where is the study based?

The study is based at the Colombia University Medical Centre in New York and includes medical centres (hospitals) from across the US and other parts of the world. 

Wendy Chung, MD, PhD
Principal Investigator
Kennedy Family Professor of Pediatrics and Medicine

Julia Wynn, MS
Principal Study Coordinator
Certified Genetic Counselor

Becca Hernan, MS
Study Coordinator
Genetic Counselor

 

Has CDH UK donated to this study?

Yes, we met with the team in August 2017 to find out for ourselves who the team were and how the study was designed and is being conducted. We have made an initial donation of £10,000 for the recruitment of families into the study. There are currently no similar studies being undertaken in the UK and so our aim is to promote the study and to assist in the recruitment of participants.

What is the purpose of the "DHREAMS" study?

The scientific goal of the DHREAMS study is to develop a better understanding of the molecular genetic basis of CDH.  Our study 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.  We 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. 

Who is eligible to enroll?

Children with a CDH.

Individuals who are currently pregnant with a fetus (baby) who has been diagnosed with a CDH.

Infants who have been recently diagnosed (either prenatally or postnatally) with CDH, before or after the CDH has been repaired.

Children or adults who had a CDH that has been repaired in the past.

What is involved if my family participates 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. If you do not live close to one of the sites enrolling individuals, a kit can be sent by mail to collect a blood or saliva sample.  You DO NOT have to travel to be part of this study.

Saliva Collection
Saliva Collection (French Subtitles)

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.

If your child is enrolled before two years of age and you live close to one of the sites enrolling individuals, we will ask your child to return for a developmental assessment at two years of age. There is no cost for this evaluation.

During the time your family is in the study, study coordinators will be in contact with your family.  You are free to call the study coordinators 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.

If your child is enrolled before 2 years of age and you live near a study site, he/she will receive a formal developmental assessment at 2 years of age.

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 and other families affected by CDH in future generations.

There is no cost to participation in the study.

You do not have to travel to NY or one of the other medical centers to participate in the study.  If you do not live in the NY area and you would like to participate in the study, we can converse by phone and mail.

What are the risks of participation in the study?

If we collect a sample of blood, there is a small risk of a bruise at the site of the needle puncture.

There is no risk to providing a saliva sample.

If other biological samples are taken during a surgery, the collection of the samples will not affect the outcome of the surgery or increase the risk of the surgery.  Specifically, collection of diaphragm tissue will not affect the surgeon’s ability to repair the diaphragm and collection of skin tissue will not affect the surgeon’s ability to close the incision site.

Participation in this study will not affect your insurance coverage.  This study does not involve clinical diagnostic genetic testing and therefore should not be reported as genetic testing on an insurance (medical or life insurance) application.

This study is not a clinical trial.  Participants will not receive any medication or be part of any experimental procedures as part of this study. 

Is there any cost?

There is no cost to you or your family.

Is our information private?

All information obtained through this study will remain strictly anonymous and confidential.  Research findings will not be part of your medical records. Your family’s name will not be published

Do I have to participate in the study?

No.  Participation is voluntary.  Your medical care will not be altered based on your family’s participation.

Can I withdraw from the study?

Yes. You may withdrawal from the study at any time by contacting one of the research coordinators.

How do I enroll in the study?

Contact Becca Hernan, research coordinator, at (646) 317-6503 or .(JavaScript must be enabled to view this email address) to learn more about the study or find out how to enroll.

Can I enroll if I'm currently pregnant?

Currently Pregnant

Women who are currently pregnant with a baby affected with CDH can participate in DHREAMS. If you are not planning to deliver with one of the DHREAMS affiliated hospitals we can work with your family and health care team to enroll your family in DHREAMS. Please contact Becca at .(JavaScript must be enabled to view this email address) for more information.

Can I enroll if my child is deceased?

Presently we are only able to enroll families in the DHREAMS study when we are able to obtain a biological sample from the affected child. If your child passed away, there may be a biological sample on your child if your child had an postmortem, if he/she had any type of surgery or if your family elected to store cord blood. Our research coordinator, Becca Hernan, can work with your family to determine if there is a biological sample. Please contact Becca at .(JavaScript must be enabled to view this email address) or (646) 317-6503 for more information.

Other options: DNA banking

Regardless of your decision to participate in the DHREAMS study, we encourage all families of children with a birth defect to save a blood sample or other biological sample from the child, especially if the child is critically ill. Even if a genetic cause cannot be detected by current testing methods, additional, more sensitive genetic tests will become available in the future. The ability to go back and complete additional testing may provide your family with valuable information about the risk to have a child affected with the same condition or information as to how to prevent the birth defect in future children. If a sample is not saved, this testing will not be possible. There are several commercial laboratories that offer DNA banking for a small fee. We, Columbia University Medical Center and any other medical center represented on this site, are not affiliated with any of these labs.

 

 

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Date: 14 Aug 2018 - 03:10 PM

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