Plain-English translation of NCT00033137 on ClinicalTrials.gov ↗ · Source last updated · Translation generated · How we translate trials
Read our Kidney Neoplasms research guide →This is a research study about Birt-Hogg-Dubé (BHD) syndrome, a rare inherited condition that increases the risk of kidney cancer, lung cysts, and certain skin growths. Researchers want to understand the genetic changes that cause BHD and how they lead to cancer, so they can eventually develop better treatments. The study involves genetic testing and collection of medical information from people with BHD and their blood relatives.
BHD is a rare condition, and doctors don't yet fully understand exactly how the genetic mutation causes kidney cancer and other health problems. By studying families with BHD, researchers hope to identify patterns that will help them predict who is at highest risk and develop new, targeted treatments.
You likely qualify if…
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If you qualify, researchers will ask you to provide a genetic sample (usually blood) and share details about your medical history and your family's health. You may undergo imaging tests to look for kidney tumors or lung cysts. The study will track your health over time to understand how BHD develops and progresses in different people. Participation helps researchers build a detailed picture of this rare disease.
AI-generated summary from trial data · Jun 30, 2026 · Not medical advice
United States
Enrollment target
~950 participants
Started
May 2002
Age range
2 Years and older
Last updated on clinicaltrials.gov in June 2026.
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Central contact
Deborah A Nielsen, R.N.
National Cancer Institute (NCI)
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