MyVHL: Patient Natural History Study

Introduction

• Org Study ID: 0001
• NTC ID: NCT03749980
• Lead Sponsor Name: VHL Alliance
• Status: RECRUITING

Conditions

• Birt-Hogg-Dube Syndrome
• Hereditary Leiomyomatosis and Renal Cell Carcinoma
• Succinate Dehydrogenase-Deficient Renal Cell Carcinoma
• Von Hippel-Lindau Disease

Brief Summary

MyVHL is a multi-patient database which helps researchers identify patterns across VHL patients. MyVHL provides you -and researchers -with more complete information about VHL, like how your lifestyle, medications, and other factors impact the disease and quality of life. These insights help you better understand the condition and help researchers know where to focus their efforts.

Due to its rarity, there is less understanding of VHL and the factors that may have an impact. The data individuals provide in MyVHL helps researchers identify and uncover factors that may increase risk, inhibit or slow tumor growth, or lead to an effective cure.

Eligibility Criteria

Inclusion Criteria:

* All patients with von Hippel-Lindau Disease (VHL)

Exclusion Criteria:

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