Beckwith-Wiedemann Syndrome (BWS) Overgrowth Registry
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Description
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.
Eligibility and criteria
What to expect
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.
Related specialties
Related conditions
We need families like you
Your time and participation make a difference in supporting the work of the Research Institute and children in our community. Learn more about opportunities to participate in our research.