A database to understand von Hippel-Lindau Disease and related conditions
MyVHL: Patient Natural History Study
This study is creating a database to see how lifestyle and other factors affect people with von Hippel-Lindau Disease and similar conditions, helping researchers find better treatments and understand the disease better.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 10000 (estimated) |
| Sex | All |
| Sponsor | VHL Alliance Academic / other |
| Locations | 1 site (Boston, Massachusetts) |
| Trial ID | NCT03749980 on ClinicalTrials.gov |
What this trial studies
MyVHL is an observational study that creates a multi-patient database to identify patterns among individuals with von Hippel-Lindau Disease and related conditions. Participants provide information about their lifestyle, medications, and other factors that may influence their disease and quality of life. This data helps researchers uncover risk factors, understand tumor growth, and potentially identify effective treatments. The study aims to enhance knowledge about these rare conditions and guide future research efforts.
Who should consider this trial
Good fit: Ideal candidates for this study are individuals diagnosed with von Hippel-Lindau Disease.
Not a fit: Patients without a diagnosis of von Hippel-Lindau Disease or related conditions may not benefit from this study.
Why it matters
Potential benefit: If successful, this study could lead to improved understanding and management of von Hippel-Lindau Disease and related conditions.
How similar studies have performed: While this approach is focused on a rare condition, similar observational studies have successfully contributed to understanding other rare diseases.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * All patients with von Hippel-Lindau Disease (VHL) Exclusion Criteria: \-
Where this trial is running
Boston, Massachusetts
- VHL Alliance — Boston, Massachusetts, United States (Recruiting)
Study contacts
- Principal investigator: Joshua Mann, MPH — VHL Alliance
- Study coordinator: Joshua Mann, MPH
- Email: josh.mann@vhl.org
- Phone: 161727756674
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.