vhl alliance

Patient Natural History Study

The VHL gene regulates multiple pathways involved in tumor growth and development. The Patient Natural History Study focuses on this gene as well as many other factors that contribute to a patient’s holistic wellbeing.

VHLA partnered with the National Organization for Rare Diseases (NORD) to develop the MyVHL Natural History Patient Study (also known as the Cancer is in Our Genes International Patient Database – CGIP) to help researchers better understand VHL and other forms of cancer, with the goal of finding better treatments, and ultimately, a cure. Among other information, the registry can answer important questions like the role lifestyle factors play in causing this genetic alteration and the impact of things like exercise, nutrition, and stress on managing the disease. Preliminary data has already been released about things such as the dramatic difference in oral health and mental health between the general population and individuals with VHL.

Quick facts about the MyVHL Patient Natural History Study:

Created as a partnership between patients and clinical researchers, including assistance from a global research council of medical specialists
IRB approved as a longitudinal study
Includes information on lifestyle that only patients can provide
International; not restricted by geography or medical institution
Information from patients updated annually

The MyVHL Patient Natural History Study complements your own research and can help you answer questions both you and your patients have.

For example:

What is the long-term impact of new or experimental treatments?
Does pregnancy or other hormonal changes impact new tumor formation and/or tumor growth?
Are there any lifestyle (diet, exercise, sleep, medications, nutritional supplements, oral health, and mood) changes that may affect tumor formation or growth?
How does emotional health affect disease progression?

How can you use the MyVHL Patient Natural History Study for your research?

Match participants with your specific research criteria
Provide baseline clinical data for your research