About MyVHL: Patient Natural History Study

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 these diseases as well as related kidney and adrenal tumors. Learning about their similarities and differences will help scientists understand how these genes work in the cell, and how we might intervene and make a difference.

Von Hippel-Lindau (VHL) is a disease which causes tumors in multiple parts of the body. Since the discovery of the VHL gene in 1993, progress has been made in understanding the processes within the cell governed by the VHL gene. The series of processes (or pathways) controlled by VHL also include the genes for Birt-Hogg-Dubé (BHD), Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC), and Succinate Dehydrogenase Complex Subunit B (SDHB), three other genetic kidney cancer syndromes. Drugs to assist in management of these diseases are beginning to emerge and will need to go through clinical trials to evaluate their effectiveness.

 These diseases are rare, which makes it difficult to gather information and develop treatments. The MyVHL: Patient Natural History Study will collect information from patients all over the world and could help researchers have a better understanding of VHL and associated diseases. The rarity of these diseases makes it difficult to conduct large clinical trials. To address these deficiencies, the VHL Alliance, in collaboration with the National Organization for Rare Disorders (NORD), has developed a patient databank to collect detailed medical information on patients with VHL, BHD, HLRCC, SDHB and related tumors, to help discover possible factors contributing to disease pathogenesis/progression, and to help evaluate efficacy of novel therapies.

 For more information, visit the VHL Alliance website at vhl.org.

 How will my information be used?

Information from the MyVHL: Patient Natural History Study will be used to further understand VHL, BHD, HLRCC, SDHB, and related tumors, and to develop new treatments. The data will help scientists to better understand the natural history (progression) of these tumor conditions and/or environmental factors that may contribute to tumor development and progression. The databank may also be used to contact patients about clinical trials, including those investigating new treatments, for which they may be eligible. Participation in a clinical trial will be based solely upon the voluntary consent of the patient. Patients will need to initiate contact with interested researchers as researchers will not be able to obtain patient contact information from the MyVHL: Patient Natural History Study.