Scientists track families to unlock secrets of inherited kidney cancer
NCT ID NCT00001238
First seen Jun 26, 2026 · Last updated Aug 25, 2026 · Updated 8 times
Summary
This study follows families with a history of inherited kidney cancer to learn more about the disease's genetic causes and how it progresses. Researchers will collect blood, tissue, and urine samples from affected individuals and their relatives. The goal is to identify new genes linked to these cancers and improve future diagnosis and management. No experimental treatments are being tested.
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 lead to better understanding of inherited kidney cancers and help identify new genetic targets for future treatments.
- What could go wrong
- This is an observational study, not a treatment trial. It may not directly benefit participants, and results may take many years to translate into therapies.
This is an AI summary of the original study and may miss details. Read our disclaimer.
Study facts
What this study's own registry entry says, in plain language.
- Participants
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About 5,000 people
The number the study aims to enrol. It can still change while the study runs.
- Started
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Dec 1990
- Lead sponsor
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A government research agency
The lead sponsor is the US National Institutes of Health.
Who can take part
This study's own entry requirements. Only the study team can say for certain whether you qualify.
Who is studied
Individuals with known or suspected inherited urologic malignant disorders and their biologic family members with inherited urologic malignancies will be recruited primarily from the urology, oncology, and genetics communities worldwide
- Ages
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2 years and older
- Sex
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Anyone
- Healthy volunteers
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Accepted
You do not need to have the condition being studied to take part.
Show the full entry requirements Hide the full entry requirements
Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.
* INCLUSION CRITERIA: Participants must be greater than or equal to 2 years of age. All participants and guardians (for children younger than 18 years of age) must sign an informed consent document indicating their understanding of the investigational nature and the risks of this study before any protocol related studies are performed. Criteria for Acceptance into this Study (i.e., Disease Categories): Disease Category I Individuals and biologic family members with a suspected or an established diagnosis of an inherited urologic malignancy in which the disease gene is known, including von Hippel-Lindau (VHL) and hereditary papillary renal carcinoma (HPRC). Disease Category II Individuals and biologic family members with a suspected or an established diagnosis of an inherited urologic malignancy in which the disease gene is not yet known, specifically hereditary forms of Type II papillary renal cancer, clear cell renal carcinoma, renal oncocytoma, chromophobe renal carcinoma or Birt Hogg Dube. Disease Category III Individuals and biologic family members who have urologic malignant diseases of suspected, but not proven genetic etiology, including families with more than one individual affected by the same or related cancers. A total of 5000 individuals will be enrolled during the study (i.e., that includes individuals registered since the beginning of the protocols in 1989 (89C0086) and 1999 (99C0101)). Enrollment per Subject Category (to include both affected and unaffected biologic relatives) Subject Category A: Category A will include individuals, and biologic relatives, who may or may not be affected who will be evaluated in the Warren G. Magnuson Clinical Center. Individuals in this category will be eligible if they or their biologic family members manifest one or more of the following features in a pattern suggestive of a heritable urologic malignant disorder: * One or more histologically proven or suspected renal carcinomas and/or cysts * Cerebellar, spinal, medullary or cerebral hemangioblastomas * Retinal angioma * Pancreatic neuro-endocrine carcinoma,micro cystadenoma and/or cysts * Pheochromocytoma * Papillary cystadenoma of the epididymis or broad ligament * Endolymphatic sac tumor * Cutaneous fibrofolliculomas or multiple skin-colored papules * History of spontaneous pneumothorax * Lung cysts * Thyroid carcinoma * Intestinal polyposis plus/minus colon cancer * Cutaneous or Uterine leiomyoma or uterine leiomyosarcoma, sarcoma Subject Category B: Category B will include individuals and the biologic relatives of patients with inherited urologic malignancies with the above listed clinical findings who live at a distance and who will not be evaluated at the Clinical Center. In some cases, local diagnostic testing may be necessary for these individuals in addition to collection of a blood sample for molecular analysis. Subject Category C: Category C will include biologic relatives who enroll in this study primarily for genetic linkage studies. These individuals will contribute a blood sample for DNA analysis only. No imaging diagnostic testing will be performed on individuals from this category. EXCLUSION CRITERIA: None
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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.
How to take part
Only the study team decides who joins. These are the ways to reach them.
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The places running it
1 site. The list below names each one and where it is.
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The official record
ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.
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A doctor treating you
A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.
Contacts and locations
Locations
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National Institutes of Health Clinical Center
RECRUITINGBethesda, Maryland, 20892, United States
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