MyVHL: Patient Natural History Study

Share your story and help find a cure for VHL

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 available in English and Spanish.

How Does MyVHL Work?

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!

What Data Will Be Shared with VHL Researchers?

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.

Looking for more information about MyVHL? Check out the following links: