RECRUITING

MyVHL: Patient Natural History Study

Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

Description

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.

Official Title

MyVHL: Patient Natural History Study

Quick Facts

Study Start:2012-01
Study Completion:2028-12
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT03749980

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Ages Eligible for Study:Not specified
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:Yes
Standard Ages:CHILD, ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. * All patients with von Hippel-Lindau Disease (VHL)
  1. Pregnancy or breastfeeding
  2. Severe psychiatric disorders
  3. Active substance abuse
  4. Unstable medical conditions
  5. Inability to comply with study requirements

Contacts and Locations

Study Contact

Joshua Mann, MPH
CONTACT
161727756674
josh.mann@vhl.org

Principal Investigator

Joshua Mann, MPH
PRINCIPAL_INVESTIGATOR
VHL Alliance

Study Locations (Sites)

VHL Alliance
Boston, Massachusetts, 02132
United States

Collaborators and Investigators

Sponsor: Joshua Mann, MPH

  • Joshua Mann, MPH, PRINCIPAL_INVESTIGATOR, VHL Alliance

Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2012-01
Study Completion Date2028-12

Study Record Updates

Study Start Date2012-01
Study Completion Date2028-12

Terms related to this study

Keywords Provided by Researchers

  • VHL
  • BHD
  • HLRCC
  • SDHB
  • MyVHL

Additional Relevant MeSH Terms

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