Collaborative Registry for Williams Syndrome

Collaborative Registry for Williams Syndrome

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This study is now recruiting. Learn more about enrolling here.

Description
CReWS (the Collaborative Registry for Williams Syndrome) has been developed for, and is owned by the Williams Syndrome Association. The Registry collects data about the lives of people diagnosed with Williams syndrome (WS) in order to advance our understanding of the condition and its underlying causes, and develop better treatments for persons with Williams syndrome.CReWS collects and organizes information & medical records on people with Williams syndrome and connects families to doctors and scientists currently researching the condition. All participants will be invited to answer surveys on medical, developmental, and social concerns beginning at the time of registration and continuing periodically going forward. For those who attend WS Clinical Consortium sites, the medical providers will add clinical data to their research records.
We expect the registry will:
  • Foster & facilitate research into medical, developmental, and social concerns for those with Williams syndrome.
  • Collect reliable and complementary data from both clinicians and families.
  • Establish best practices for care of children and adults with WS.
  • Gather longitudinal data to better understand long-term outcomes.
  • Establish a large study cohort for a rare condition.
  • Support research in WS by more easily connecting those who conduct research, with individuals who are interested in participating in research.

Eligibility and criteria
IRB Number:
23-021242
Clinical trial phase:
N/A
Official title:
Collaborative Registry for Williams Syndrome

What to expect

Related specialties
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