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The BWS Registry was developed to improve our understanding and management of Beckwith-Wiedemann syndrome (BWS), hemihypertrophy/lateralized overgrowth, and other disorders.
The BWS registry involves collecting medical information and records from patients. To join the registry, families complete a consent form to agree to participate. Once a family joins, we assign them a special number and all information collected is stored under this number to protect confidentiality. We study this information to improve our understanding about BWS and how to better manage the disorder. There are other parts of the study (such as sharing pictures and samples) that are optional and families can choose whether to participate in these parts or not.
Learn more: BWS REGISTRY BROCHURE
Thank you for your interest in the BWS Registry!
Families who wish to join the BWS Registry must give us permission (consent) for review of medical records and other optional parts of the study. Optional parts include sharing photographs, samples, and contact preferences. Once a family completes a consent form, each family member will be assigned a unique study number. To protect his/her identity, medical information (and samples as applicable) will be stored with this number. More information about the Registry (Video).
Contact us at BWS [at] chop.edu to discuss your questions.
The Informed Consent Form outlines all parts of the study and reviews your choices for optional consents as well.
About the Consent Form
- Informed Consent (Video) - This presentation reviews the consent form and what is involved in the study.
- Completing the Consent Form (Video) - This presentation will guide you through how to complete the consent form.
Families can join the registry by completing a digital consent form. This online system is secure and your information will be protected. To enroll online please complete the following steps:
- Join the Main Study — Complete this form to join the registry
- Medical Release Form — This form will allow us to collect medical records. Please download this form and return a completed copy to BWS [at] chop.edu. You may complete one form for each physician/specialist or you can complete the bottom portion and provide our team with a list of your physicians/specialists for us to complete the top for each.
- Return of Results — If you have leftover samples or plan to share samples as part of the study, you have the opportunity to complete this questionnaire about your wishes about returning possible results of research testing. (Please note: If your child is aged 15 years or older, he/she will need to complete a portion of this form)
Complete a Paper Form
Completed forms can be returned to the study team by email, fax, or mail. If you require a shipping label to return any forms or medical records, please contact the study team.
Email: BWS [at] chop.edu
Fax: 215-590-3298 (ATTN: BWS Registry)
ATTN: BWS Registry
Dr. Jennifer Kalish
Colket Translational Research Building
3501 Civic Center Blvd.
3rd Floor, Office 3028
Philadelphia, PA 19104-4318