Investigating the genetic causes of hereditary kidney cancer

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This observational study focuses on hereditary leiomyomatosis renal cell cancer (HLRCC), a genetic condition that increases the risk of developing kidney tumors and other related health issues. It aims to identify the genetic mutations responsible for HLRCC, characterize the types of kidney tumors associated with the condition, and assess the likelihood of tumor development in affected individuals. Participants will include those with known or suspected HLRCC and their family members, allowing for a comprehensive understanding of the disease's genetic underpinnings and its clinical implications.

Why it matters

Who can join: the full rules

* INCLUSION CRITERIA:
* Individuals that meet one or more of the following criteria:

  * 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; or
    * Cutaneous leiomyoma and uterine leiomyoma; or
    * Multiple cutaneous leiomyoma; or
    * Kidney cancer and uterine leiomyomata

OR

--Renal tumor histology consistent with HLRCC including, but not limited to: Collecting Duct and/or Papillary, Type II

OR

--Are a relative (related by blood) of an individual with a confirmed or suspected diagnosis of HLRCC.

* Participants must be \>= 2 years of age.
* All participants 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.

EXCLUSION CRITERIA:

None

Where it's running

• National Institutes of Health Clinical Center
  Bethesda, Maryland, United States Recruiting

Study contacts

• Principal investigator: W. Marston Linehan, M.D. — National Cancer Institute (NCI)
• Study coordinator: Deborah A Nielsen, R.N.
• Email: deborah.nielsen@nih.gov
• Phone: (240) 760-6247

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

• Your Kidney Cancer Immunotherapy: How You Get It and If Labs Can Be At Home

  This study tests whether people with kidney cancer prefer intravenous or subcutaneous immunotherapy and whether at‑home lab draws plus telehealth visits before treatment are practical.

  Recruiting at 7 sites Phase 4 Memorial Sloan Kettering Cancer Center · Basking Ridge, New Jersey and 6 other locations · NCT07872553

• Perioperative UDCA to Protect Kidney Function in Partial Nephrectomy

  This study tests whether giving ursodeoxycholic acid around surgery can help protect kidney function in adults having partial nephrectomy for kidney tumors.

  Recruiting Phase 2 Jinling Hospital, China · Nanjing, Jiangsu · NCT07672860

• Side Effects and Resource Navigation Program for Cancer Patients

  This program tests whether a navigation service helps adults with kidney, bladder, breast, or lung cancer manage immunotherapy better than usual care.

  Recruiting at 7 sites Memorial Sloan Kettering Cancer Center · Basking Ridge, New Jersey and 7 other locations · NCT07646847

• EBNK-001 allogeneic NK cell therapy with low-dose IL-15, with or without pembrolizumab, for advanced solid tumors

  This treatment tests an off-the-shelf NK cell product (EBNK-001) given with low-dose IL-15, either alone or with pembrolizumab, in adults with advanced or metastatic solid tumors who have exhausted standard options.

  Recruiting Phase 1/2 Essen Biotech · Beijing, Beijing Municipality · NCT07410676

• HC-7366 plus nivolumab with or without ipilimumab for advanced clear-cell kidney cancer (SHARK)

  This trial tests whether adding HC-7366 to nivolumab, with or without ipilimumab, can help control advanced clear-cell kidney cancer.

  Recruiting at 2 sites Phase 1 M.D. Anderson Cancer Center · Dallas, Texas and 1 other locations · NCT07401875

• Neoadjuvant HIF-2α inhibitor with or without PD-1 antibody for resectable clear cell kidney cancer

  This trial tests whether casdatifan alone or combined with zimberelimab can shrink tumors in people with resectable clear cell kidney cancer before surgery.

  Recruiting at 2 sites Phase 2 Dana-Farber Cancer Institute · Boston, Massachusetts and 2 other locations · NCT07397611

How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.