Scientists hunt for gene behind rare kidney cancer syndrome
NCT ID NCT00050752
First seen Jun 24, 2026 · Last updated Jun 27, 2026 · Updated 1 time
Summary
This study aims to uncover the genetic causes of hereditary leiomyomatosis renal cell cancer (HLRCC), a condition that can lead to painful skin bumps, uterine fibroids, and kidney tumors. Researchers will study people with known or suspected HLRCC and their family members to identify gene mutations and understand how kidney tumors develop. Participants undergo medical exams, blood tests, scans, and genetic analysis, but will not receive individual genetic results as their meaning is still unknown.
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 research could identify the gene changes that cause HLRCC and clarify who is at risk for kidney cancer, potentially guiding future screening or prevention strategies.
What could go wrong
This is an observational study, not a treatment trial. It may take years to gather enough data, and findings may not directly lead to new therapies or immediate clinical changes.
Disclaimer
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the original study
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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.
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.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
Contacts and locations
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Study contacts
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
Locations
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National Institutes of Health Clinical Center
RECRUITINGBethesda, Maryland, 20892, United States
Contact Phone: •••-•••-••••