Study Results
The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.
Basic Information
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RECRUITING
10000 participants
OBSERVATIONAL
2012-01-31
2028-12-31
Brief Summary
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Due to its rarity, there is less understanding of VHL and the factors that may have an impact. The data individuals provide in MyVHL helps researchers identify and uncover factors that may increase risk, inhibit or slow tumor growth, or lead to an effective cure.
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Detailed Description
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Conditions
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Study Design
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COHORT
OTHER
Eligibility Criteria
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Inclusion Criteria
Exclusion Criteria
ALL
Yes
Sponsors
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National Organization for Rare Disorders
OTHER
Joshua Mann, MPH
OTHER
Responsible Party
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Joshua Mann, MPH
Director of Health
Principal Investigators
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Joshua Mann, MPH
Role: PRINCIPAL_INVESTIGATOR
VHL Alliance
Locations
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VHL Alliance
Boston, Massachusetts, United States
Countries
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Central Contacts
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Facility Contacts
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References
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Larcher A, Rowe I, Belladelli F, Fallara G, Raggi D, Necchi A, Montorsi F, Capitanio U, Salonia A; OSR VHL Program. Von Hippel-Lindau disease-associated renal cell carcinoma: a call to action. Curr Opin Urol. 2022 Jan 1;32(1):31-39. doi: 10.1097/MOU.0000000000000950.
Other Identifiers
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0001
Identifier Type: -
Identifier Source: org_study_id
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