Today's breakthroughs in the management of VHL are a direct result of the contributions and participation in clinical trials by many VHL patients and families around the world.
Be Part of Finding a Cure
In addition to donating to the VHL Alliance research efforts, there are many ways to get involved and support this important research:
Take Action
Participate in Research
VHLA is committed to advancing the understanding of VHL and related cancers. People with VHL can help researchers achieve this goal, improve treatments, and hopefully one day find a cure for VHL.
MyVHL: Patient Natural History Study
Do you want to help find a cure?
Tell your story and help build the data for the cure.
Learn more about von Hippel-Lindau and help researchers unravel the mysteries of the disease. Your information and input can help researchers better understand VHL—contributing to more promising research to improve the quality of life for patients living with VHL and ultimately, leading to a cure
Help researchers unravel the mysteries of VHL while learning more about how your VHL journey compares with others. Your information and input is needed to help researchers improve the quality of life for patients living with VHL and ultimately, lead to a cure.
MyVHL is a multi-patient registry or databank 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. This information can only be answered by patients and is necessary to help researchers identify their impact on VHL such as factors that may increase risk, inhibit or slow tumor growth, or lead to an effective cure.
The success of MyVHL—and breakthroughs in treatments and ultimately a cure—require collaboration between researchers, doctors, and VHL patients—YOU! Please take the time to participate in the study. All of the information shared in this study will remain secure and confidential.
ClinicalTrials.gov Identifier: NCT03749980
MyVHL is a patient registry or database consisting of surveys that provides researchers with the most up-to-date de-identified data available. These surveys ask about your:
- *Lifestyle, including nutrition, exercise, anxiety, and oral health
- * VHL manifestations, including tumor size and locations
* Medications
All data entered needs to be authenticated before it can be used by a researcher. Therefore, you will be asked to provide your medical records, such as scans and reports. They can be uploaded, mailed, or obtained by VHLA after you complete a Medical Record Release Form.
Your first time around will take some time, but do not worry because updating your data in the future will be much faster! In order to show our appreciation for your help in participating in MyVHL toward finding a cure, the VHL Alliance will provide a $50 Amazon gift card to all US-based participants who complete all of their applicable surveys, as well as submit scans and/or a signed medical records release form.
Your first time around will take some time, but do not worry because updating your data in the future will be much faster! In order to show our appreciation for your help in participating in MyVHL toward finding a cure, the VHL Alliance will provide a $50 Amazon gift card to all US-based participants who complete all of their applicable surveys, as well as submit scans and/or a signed medical records release form.
Only de-identified data will be shared with researchers, meaning NO identifying factors will not be provided. Researchers are required to submit a data request form which is thoroughly reviewed by VHLA’s Research Council. ONLY data necessary for the defined study will be provided. Researchers do NOT have access to the database itself.
