Monitoring for VHL Disease

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Monitoring (Screening) for Von Hippel-Lindau (VHL) Disease Manifestations

The multi-organ nature of Von Hippel-Lindau (VHL) Disease requires screening for disease manifestations throughout one’s lifetime. Specific disease manifestations have an established age of onset. Therefore, across one’s life, screening may differ.  Screening for disease manifestations may rely on clinical exam, laboratory assessment, or imaging.

Once a tumor is identified, the frequency of surveillance imaging greatly varies by organ, tumor size, the rate of growth, and potential morbidity of disease.

Age-Related VHL Screening Recommendations (VHL Alliance)

For more information on these guidelines (PDF)

An important consideration, these screening recommendations are for the early identification of a tumor. Once a tumor is identified, a specialty provider does not need to follow the screening recommendations as tumors may require closer evaluations for monitoring and potential intervention. Similarly, after treatment, there may also be further surveillance recommendations provided by the specialty provider to monitor for local or distant recurrence.

For an appointment with the UCLA VHL Program for a comprehensive evaluation and/or referral to one of our providers, please contact us at 310-794-2858.