Clinical trial Recruiting at 1 site Observational Ages 18 and up

Understanding Urothelial and Rare Genitourinary Cancers

Official title: A Multi-Center Natural History of Urothelial Cancer and Rare Genitourinary Tract Malignancies

Run by National Institutes of Health Clinical Center (CC) · NCT04923178 · Data updated 2026-11-12

This study is trying to learn more about urothelial and rare genitourinary cancers by gathering health information and samples from adults who have been diagnosed with these cancers.

Quick facts

Study typeObservational
Ages18 Years and up
SexAll
Enrollment1100 (estimated)
SponsorNational Institutes of Health Clinical Center (CC)
NIH
Locations1 site (Bethesda, Maryland)
StatusRecruiting
StartedOctober 24, 2022
Main results expectedDecember 1, 2041
Study endsDecember 1, 2042
Registry record updatedOctober 16, 2026
Trial IDNCT04923178 on ClinicalTrials.gov

Is this trial a fit for you?

Likely a good fit

Ideal candidates include adults aged 18 and older diagnosed with urothelial or rare genitourinary cancers.

Probably not a fit

Patients without a confirmed diagnosis of urothelial or rare genitourinary cancers may not benefit from this study.

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 aims to gather comprehensive data on the natural history of urothelial and rare genitourinary cancers, including various histological variants. Participants aged 18 and older with confirmed diagnoses of these cancers will undergo medical history screening, physical exams, and provide blood and urine samples. The study will also collect clinical photographs and family cancer history surveys to enhance understanding of these rare tumors and inform future treatment protocols.

Why it matters

Potential benefit: If successful, this study could lead to improved diagnosis and treatment strategies for patients with rare genitourinary cancers.

How similar studies have gone: While there is limited data on similar studies due to the rarity of these cancers, the systematic approach of this study may provide valuable insights that have not been previously explored.

Who can join: the full rules

Show full inclusion / exclusion criteria
* INCLUSION CRITERIA:
* Participants must have histologically or cytologically confirmed urothelial or rare genitourinary cancer including but not limited to the following: small cell carcinoma of the bladder; adenocarcinoma of the bladder; squamous cell carcinoma of the bladder; plasmacytoid urothelial carcinoma; any penile cancer; any testicular cancer, sarcomatoid renal cell carcinoma; sarcomatoid urothelial carcinoma; renal medullary carcinoma or other miscellaneous histologic variants of the urothelial carcinoma, such as, but not limited to micropapillary, giant cell, lipid-rich, clear cell and nested variants, large cell neuroendocrine carcinoma, lymphoepithelioma-like carcinoma and mixed patterns will be considered, as well as small cell neuroendocrine prostate cancer, testicular Sertoli or Leydig cell tumors. Any genitourinary cancer can be included at the principal investigator's discretion.
* Age \>=18 years.
* Ability of participant to understand and the willingness to sign a written informed consent document.

EXCLUSION CRITERIA:

-None

Where it's running

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

Study contacts

Similar studies

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

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.
Last reviewed 2026-11-14 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.