Information for Researchers

The MyVHL: Patient Natural History Study is collecting information about von Hippel-Lindau (VHL), Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC), Birt-Hogg-Dubé (BHD), Succinate Dehydrogenase Complex Subunit B (SDHB) and other related conditions in hopes of finding a cure for kidney and adrenal tumors as well as these diseases. The MyVHL: Patient Natural History Study will include individuals (adults and minors) who have a diagnosis of VHL, HLRCC, BHD, SDHB, or other related conditions, including those who have passed away. The diagnosis must be confirmed by a physician, usually with a positive DNA diagnosis or a positive clinical diagnosis.

Data collected will cover the following topics: demographics, medical history, genetics, nutrition & exercise, eye, hearing, neurology, oral health & tobacco use, skin, heart health, lung, kidney, male/female reproductive tract, mood, digestive issues & pancreas, thyroid, pheochromocytoma & paraganglioma.

Please contact or phone (617) 277-5667 x4 and ask for the MyVHL Coordinator if you are interested in using the MyVHL: Patient Natural History Study for a research project, or if you have any questions.