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Beckwith-Wiedemann Syndrome (BWS) Overgrowth Registry
This study is now recruiting.
The primary objective of this registry/repository is to store ongoing clinical data and biospecimens to facilitate the conduct of research on disorders of growth, genetic, and epigenetic alterations. This can also include storage of samples and data from relatives of the index patients to serve as study controls.
Who Do I Contact?
If you are interested in participating in the study or want to learn more please contact our study team at OvergrowthResearch [at] chop.edu or 267-426-0938.
Eligibility & Criteria
IRB #:
13-010658
Official Title:
Clinical and Molecular Studies of Growth and Epigenetic Alterations
Study Phase:
Not Applicable
Eligible Age Range:
0 Months - 99 Years
Gender:
All
Study Categories:
Visit Criteria
Participation includes a review of medical history and we may collect of samples like blood or saliva to study now and in the future. The medical history and exam information will be stored securely in a registry and the samples will be kept safely in a biorepository.
Required study procedures are as follows:
- We will review your medical records every 6 months. This is the only required portion of the study.
Optional study procedures include the following:
- Physical exams, blood samples (to be coordinated with your clinical care visits), skin biopsy, collection of tissue specimens that are removed during a procedure that are not needed for medical care (and often would be thrown away), collection of other specimens (such as urine, saliva or a cheek swab), and photographs and audiovisual recordings. You do not need to do any of these optional procedures in order to participate in the study.
