Actively Recruiting
MyVHL: Patient Natural History Study
Led by Joshua Mann, MPH · Updated on 2024-04-26
10000
Participants Needed
1
Research Sites
882 weeks
Total Duration
On this page
Sponsors
J
Joshua Mann, MPH
Lead Sponsor
N
National Organization for Rare Disorders
Collaborating Sponsor
AI-Summary
What this Trial Is About
MyVHL is a multi-patient database which helps researchers identify patterns across VHL patients. MyVHL provides you -and researchers -with more complete information about VHL, like how your lifestyle, medications, and other factors impact the disease and quality of life. These insights help you better understand the condition and help researchers know where to focus their efforts. 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.
CONDITIONS
Official Title
MyVHL: Patient Natural History Study
Who Can Participate
Eligibility Criteria
You may qualify if you...
- All patients with von Hippel-Lindau Disease (VHL)
You will not qualify if you...
History of severe allergic reactions to study medication Currently pregnant or breastfeeding Recent participation in another clinical trial within the last 30 days Presence of uncontrolled medical conditions that could affect safety
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 1 location
1
VHL Alliance
Boston, Massachusetts, United States, 02132
Actively Recruiting
Research Team
J
Joshua Mann, MPH
CONTACT
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
0
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