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NCT03749980 · ClinicalTrials.gov registry record
MyVHL: Patient Natural History Study
A clinical trial of Von Hippel-Lindau Disease and Hereditary Leiomyomatosis and Renal Cell Cancer, sponsored by Joshua Mann, MPH.
- Recruiting
- Registry status
- 10,000
- Enrollment target
- 1
- Study location
NCT03749980: Recruiting study of Von Hippel-Lindau Disease and Hereditary Leiomyomatosis and Renal Cell Cancer, sponsored by Joshua Mann, MPH.
NCT03749980 is a study of Von Hippel-Lindau Disease and Hereditary Leiomyomatosis and Renal Cell Cancer that is actively recruiting participants, run by Joshua Mann, MPH. The registered enrollment target is 10,000 participants, above the 244-participant average among 5 other Von Hippel-Lindau Disease trials with a reported enrollment target (3998% higher). The trial reports 1 study location across 1 state. According to ClinicalTrials.gov, the official US trial registry.
The verdict
NCT03749980, a study of Von Hippel-Lindau Disease and Hereditary Leiomyomatosis and Renal Cell Cancer, is actively recruiting participants, sponsored by Joshua Mann, MPH.
- RECRUITING
- Registry status
- 10,000 participants
- Enrollment target
- 1
- Study location
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.
Primary Outcome
Data regarding changes in number of CNS, kidney, adrenal, retinal, ear, and pancreatic tumors, along with cystadenomas and lesions in the lungs, liver and skin, over a lifetime.
Conditions Studied
Study Locations (1)
Massachusetts
- VHL Alliance - Boston
Trial Details
| Field | Value |
|---|---|
| Enrollment Target | 10,000 participants |
| Start Date | 2012-01 |
| Est. Completion | 2028-12 |
What NCT03749980 shows while recruiting
NCT03749980 is an observational study that tracks outcomes without assigning an intervention. Its 10,000 participants enrollment target places it among the larger protocols in the corpus, above the 244-participant average among 5 other Von Hippel-Lindau Disease trials with a reported enrollment target (3998% higher).
The record links to 4 conditions, with Von Hippel-Lindau Disease appearing as the primary indexed condition, and to 0 interventions.
NCT03749980 reports a single indexed study location in Massachusetts.
Frequently Asked Questions
What is clinical trial NCT03749980 about?
NCT03749980 is a clinical study titled "MyVHL: Patient Natural History Study". 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 bett...
What is the current status of trial NCT03749980?
This trial is currently recruiting. The enrollment target is 10,000 participants. The study started on 2012-01. Estimated completion is 2028-12.
What conditions does trial NCT03749980 study?
This clinical trial studies the following conditions: Von Hippel-Lindau Disease, Hereditary Leiomyomatosis and Renal Cell Cancer, Birt-Hogg-Dube Syndrome, SDHB Gene Mutation.
Who is sponsoring clinical trial NCT03749980?
This trial is sponsored by Joshua Mann, MPH, which has 1 total clinical trials registered on ClinicalTrials.gov.
Where is trial NCT03749980 being conducted?
This trial has 1 study location across Massachusetts. Contact the study sites directly through ClinicalTrials.gov for enrollment availability.
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