MyVHL: Patient Natural History Study
Launched by JOSHUA MANN, MPH · Nov 20, 2018
Trial Information
Current as of July 01, 2025
Recruiting
Keywords
ClinConnect Summary
The MyVHL study is focused on understanding von Hippel-Lindau Disease (VHL) and related conditions by collecting information from patients. This research aims to spot patterns in how VHL affects different individuals, including how factors like lifestyle and medications might influence the disease and overall quality of life. By joining this study, you’ll help researchers learn more about VHL, which is important since it's a rare condition and not much is known about what impacts it.
If you have been diagnosed with VHL, you may be eligible to participate in this study. All patients with this condition can join, regardless of age or gender. As a participant, you’ll provide information about your health and experiences, which will be used to help researchers find ways to slow tumor growth or discover potential treatments. Your contribution is vital for improving understanding and care for those with VHL.
Gender
ALL
Eligibility criteria
- Inclusion Criteria:
- • All patients with von Hippel-Lindau Disease (VHL)
- Exclusion Criteria:
- • -
About Joshua Mann, Mph
Joshua Mann, MPH, is a dedicated clinical trial sponsor with a strong commitment to advancing healthcare through rigorous research and innovation. With a Master of Public Health degree, Joshua brings a comprehensive understanding of public health principles and clinical study design to his work. He focuses on fostering collaborative relationships among stakeholders, ensuring compliance with regulatory standards, and promoting ethical practices in clinical research. His expertise in data analysis and patient-centered approaches drives the successful execution of trials aimed at improving health outcomes and enhancing therapeutic interventions. Joshua is passionate about translating research findings into actionable solutions that benefit communities and enhance overall public health.
Contacts
Jennifer Cobb
Immunology at National Institute of Allergy and Infectious Diseases (NIAID)
Locations
Boston, Massachusetts, United States
Patients applied
Trial Officials
Joshua Mann, MPH
Principal Investigator
VHL Alliance
Timeline
First submit
Trial launched
Trial updated
Estimated completion
Not reported
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