Actively Recruiting
Von Hippel-Lindau (VHL): Clinical Manifestations, Diagnosis, Management and Molecular Bases of Inherited Renal and Other Urologic Malignant Disorders
Led by National Cancer Institute (NCI) · Updated on 2026-03-31
5000
Participants Needed
1
Research Sites
N/A
Total Duration
On this page
AI-Summary
What this Trial Is About
We will investigate the clinical manifestations and molecular genetic defects of heritable urologic malignant disorders. Families with urologic malignancy with known or suspected genetic basis will be enrolled. Affected individuals or individuals suspected of having a germline urologic malignant disorder will undergo periodic clinical assessment and genetic analyses for the purpose of: 1) definition and characterization of phenotype, 2) determination of the natural history of the disorder, and 3) genotype/phenotype correlation. Genetic linkage studies may be performed in situations in which the genetic basis of the disorder has not been elucidated.
CONDITIONS
Official Title
Von Hippel-Lindau (VHL): Clinical Manifestations, Diagnosis, Management and Molecular Bases of Inherited Renal and Other Urologic Malignant Disorders
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Participants must be 2 years of age or older.
- Individuals or family members with a suspected or confirmed inherited urologic malignancy where the disease gene is known, including von Hippel-Lindau (VHL) and hereditary papillary renal carcinoma (HPRC).
- Individuals or family members with a suspected or confirmed inherited urologic malignancy where the disease gene is not yet known, including hereditary forms of Type II papillary renal cancer, clear cell renal carcinoma, renal oncocytoma, chromophobe renal carcinoma, or Birt Hogg Dube.
- Individuals or family members with urologic malignant diseases suspected to have a genetic cause, including families with multiple affected members.
- Participants or family members with features suggestive of a heritable urologic malignant disorder, such as renal carcinomas or cysts, cerebellar/spinal/cerebral hemangioblastomas, retinal angioma, pancreatic neuro-endocrine tumors, pheochromocytoma, papillary cystadenoma, endolymphatic sac tumor, skin lesions, spontaneous pneumothorax, lung cysts, thyroid carcinoma, intestinal polyposis, or leiomyomas.
- Participants must provide informed consent (or guardian consent for minors).
You will not qualify if you...
History of severe allergic reactions to study medication Currently pregnant or breastfeeding Recent participation in another clinical trial within the last 30 days Presence of uncontrolled medical conditions that could affect safety
AI-Screening
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Trial Site Locations
Total: 1 location
1
National Institutes of Health Clinical Center
Bethesda, Maryland, United States, 20892
Actively Recruiting
Research Team
D
Deborah A Nielsen, R.N.
CONTACT
W
W. Marston Linehan, M.D.
CONTACT
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
3
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