MedTrace Logo

MyVHL: Patient Natural History Study

NCT03749980 · Status: RECRUITING · Type: OBSERVATIONAL · Enrollment: 10000

Last updated 2024-04-26

No results posted yet for this study

Summary

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

  • Von Hippel-Lindau Disease
  • Hereditary Leiomyomatosis and Renal Cell Cancer
  • Birt-Hogg-Dube Syndrome
  • SDHB Gene Mutation

Sponsors & Collaborators

  • National Organization for Rare Disorders

    collaborator OTHER

  • Joshua Mann, MPH

    lead OTHER

Principal Investigators

  • Joshua Mann, MPH · VHL Alliance

Eligibility

Sex
ALL
Healthy Volunteers
Yes

Timeline & Regulatory

Start
2012-01-31
Primary Completion
2028-12-31
Completion
2028-12-31

Countries

  • United States

Study Locations

More Related Trials

Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT03749980 on ClinicalTrials.gov