Hereditary Leiomyomatosis Renal Cell Cancer - Study of the Genetic Cause and the Predisposition to Renal Cancer
Launched by NATIONAL CANCER INSTITUTE (NCI) · Dec 17, 2002
Trial Information
Current as of June 26, 2025
Recruiting
Keywords
ClinConnect Summary
This clinical trial is studying hereditary leiomyomatosis renal cell cancer (HLRCC), a condition that can lead to kidney tumors and other health issues. Researchers want to understand what genetic changes cause HLRCC, the types of kidney tumors that can develop, and how likely it is for someone with HLRCC to get a kidney tumor. The study is looking for participants who might have HLRCC or have family members with related conditions, such as skin bumps, uterine tumors, or kidney cancer.
If you or a family member are eligible, you can expect to undergo a thorough evaluation that includes physical exams, medical history reviews, and various tests like blood samples and imaging scans. Participants will discuss their results with healthcare professionals, but the genetic findings may not be immediately shared since their implications are still being studied. The trial is currently recruiting participants aged 2 and older, and those interested will need to provide consent before joining.
Gender
ALL
Eligibility criteria
- * INCLUSION CRITERIA:
- Patients suspected or known to have phenotype or genotype suggestive of Hereditary Leiomyomatosis and Renal Cell Cancer Syndrome (HLRCC), such as:
- • Cutaneous leiomyoma and kidney cancer
- • Cutaneous leiomyoma and uterine leiomyoma
- • Multiple cutaneous leiomyoma
- • Kidney cancer and uterine leiomyomata
- • Renal tumor histology consistent with HRLRCC including, but not limited to: Collecting Duct and/or Papillary, Type II
- • All patients and parents/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. Patients under the age of 18 but who are age 13 or older will be asked to sign an assent document prior to participation.
- • Participants must be \>= 2 years of age.
- • A relative (related by blood) of a patient with a confirmed or suspected diagnosis of HLRCC.
- EXCLUSION CRITERIA:
- • None
About National Cancer Institute (Nci)
The National Cancer Institute (NCI) is a prominent component of the National Institutes of Health (NIH), dedicated to advancing cancer research and improving patient outcomes through innovative clinical trials. As a leading sponsor of cancer-related studies, NCI focuses on facilitating the development of new therapies, enhancing prevention strategies, and understanding the biology of cancer. The institute collaborates with academic institutions, healthcare providers, and industry partners to conduct rigorous clinical trials that aim to translate scientific discoveries into effective treatments. NCI’s commitment to fostering a robust research environment supports the mission to eliminate cancer as a major health problem.
Contacts
Jennifer Cobb
Immunology at National Institute of Allergy and Infectious Diseases (NIAID)
Locations
Bethesda, Maryland, United States
Bethesda, Maryland, United States
Patients applied
Trial Officials
W. Marston Linehan, M.D.
Principal Investigator
National Cancer Institute (NCI)
Timeline
First submit
Trial launched
Trial updated
Estimated completion
Not reported
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