VHL tumor growth study aims to predict which lesions need surgery

NCT ID NCT00005902

First seen Jun 25, 2026 · Last updated Jun 27, 2026 · Updated 1 time

Summary

This 5-year study follows 250 people with von Hippel-Lindau disease who have brain or spinal cord tumors. Researchers use regular MRI scans and blood tests to see how fast tumors grow and what factors like hormones might affect growth. The goal is to better understand which tumors become dangerous, so doctors can make smarter decisions about surgery.

What this could mean

Our plain-language read of the trial. This is informational only — not medical advice or a prediction.

What this could lead to

If successful, this could help doctors predict which tumors will grow and need treatment, avoiding unnecessary surgeries.

What could go wrong

This is an observational study, not a treatment trial. It may not lead to direct benefits for participants, and results may take years to influence care.

Disclaimer Read more

This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.

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Conditions

The condition(s) this trial relates to.

Cysts hemangioblastoma von Hippel-Lindau disease

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Contacts and locations

Locations

  • National Institutes of Health Clinical Center

    Bethesda, Maryland, 20892, United States