Rare gene study aims to unlock kidney cancer risks

NCT ID NCT00033137

Recruiting now Knowledge-focused Sponsor: National Cancer Institute (NCI) Source: ClinicalTrials.gov ↗

First seen Jun 27, 2026 · Last updated Aug 14, 2026 · Updated 2 times

Summary

This study looks at a rare inherited condition called Birt-Hogg-Dube (BHD) syndrome, which raises the risk of kidney cancer. Researchers will collect blood, saliva, and tissue samples from up to 950 participants to find the genes involved and understand how kidney tumors grow. The goal is to better predict cancer risk and guide monitoring for affected families.

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 study could lead to better ways to predict kidney cancer risk in people with BHD syndrome and improve monitoring guidelines.
What could go wrong: This is an observational study, not a treatment trial. It may not directly change patient care, and findings may take years to translate into clinical practice.

This is an AI summary of the original study and may miss details. Read our disclaimer.

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Conditions

The condition(s) this trial relates to.

Birt-Hogg-Dube syndrome kidney cancer kidney neoplasm neoplasm pneumothorax

As listed by the trial registrant

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

FLCN PROTEIN, HUMAN KIDNEY CANCER KIDNEY NEOPLASMS PNEUMOTHORAX

Contacts and locations

Locations

National Institutes of Health Clinical Center
RECRUITING

Bethesda, Maryland, 20892, United States

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