vhl alliance

Patient Natural History Study

The Patient Natural History Study (also known as the Cancer in our Genes International Patient Databank- CGIP) is a partnership between patients and clinical researchers. It was developed at the recommendation of the VHLA Research Council.

People with VHL, BHD, HLRCC, SDH, and other related genetic cancer syndromes have tumors that develop relatively slowly (when compared with other conditions that cause tumors to grow.) In order to preserve the functions of the affected organs for people with these conditions, these slow growing tumors are watched over time and only removed when necessary. This gives researchers a unique opportunity to understand factors affecting tumor development and growth rate. Research on VHL and greater understanding of the disease will lead to a cure for many forms of cancer.

Patients can provide a crucial piece of the puzzle needed to better understand these conditions and find a cure. Cancer does not give up its secrets easily, but your information, combined with the information from thousands of other patients will give researchers a chance to fight cancer on your behalf.

Don’t let your information be the missing link. Register and participate in this study today!


All of the information shared with this study will remain secure and confidential.