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You can search the collection of research studies being conducted at the NIH Clinical Center at Search the Studies. In addition, clinicaltrials.gov provides patients, family members, and members of the public easy and free access to information on clinical studies for a wide range of diseases and conditions.

Patient Recruitment

Pentalogy of Cantrell

a mother holding her baby

A Research Study for Pentalogy of Cantrell

Pentalogy of Cantrell is a rare disorder in which patients have a combination of severe defects of the sternum, diaphragm, heart and abdominal wall. The defects are apparent before birth or at birth.

Purpose of the study:

Doctors at the National Institutes of Health Clinical Center are collecting blood or tissue samples from patients, and their family members, with Pentalogy of Cantrell and other similar conditions. Researchers want to better understand these types of syndromes and determine if there is a genetic cause. Study-related tests and procedures are provided at no cost to you.

Become involved:

  • If your child's physician suspects or has diagnosed your child with Pentalogy of Cantrell (or similar condition) ask the physician to contact the study researcher, Dr. Robert S. Adelstein, at NIH for a phone consultation.
  • If you decide to become involved, samples for genetic testing will be collected and sent to the NIH.
  • Your child will continue to see his or her regular physician for treatment of his or her condition.

Location:
The NIH Clinical Center, America's research hospital, is located in Bethesda, Maryland and is accessible via the Washington D.C. metro system (Red line, Medical Center station)

For more information, please contact:
Robert S. Adelstein, M.D.
adelster@nhlbi.nih.gov
Call: 301-496-1865
TTY: 1-866-411-1010
Se habla español

Or go online:
clinicaltrials.gov
Refer to study # 04-H-0202

Department of Health and Human Services
National Institutes of Health
National Heart, Lung, and Blood Institute (NHLBI)

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This page last updated on 09/07/2017

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