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All Genders
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ID04792463

Frequency and Clinical Phenotype of BAP1 Hereditary Predisposition Syndrome

Led by Mohamed Abdel-Rahman · Updated on 2026-03-09

500

Participants Needed

1

Research Sites

N/A

Total Duration

On this page

AI-Summary

What this Trial Is About

This research focuses on individuals who have a hereditary risk for various cancers due to mutations in the BAP1 gene. The study aims to better understand the clinical features and frequency of BAP1-related cancer syndrome, which includes cancers such as uveal melanoma, cutaneous melanoma, mesothelioma, renal cell carcinoma, and others. By characterizing those at high risk, the study hopes to improve screening, prevention, and treatment strategies for patients and their families with this hereditary condition. Participants include those with personal or family histories of cancers linked to BAP1 mutations, as well as individuals with documented BAP1 gene variants. The study is observational and does not involve treatment but collects detailed clinical and genetic information over time. The research will monitor the prevalence of BAP1 variants, clinical tumor features, and age of onset, while also assessing environmental and genetic factors that may influence cancer risk. Throughout the study, participants will provide medical history and family cancer information, complete questionnaires on environmental risks, and undergo genetic testing. Researchers will analyze tumor pathology and genetic changes to understand disease progression and treatment outcomes. The study spans multiple years, with primary outcomes measured over five years and secondary outcomes over ten years, aiming to provide comprehensive data to guide future management of BAP1 hereditary cancer syndrome.

CONDITIONS

Brief Title

Frequency and Clinical Phenotype of BAP1 Hereditary Predisposition Syndrome

Who Can Participate

All Genders
Healthy Volunteers

Eligibility Criteria

Eligible

You may qualify if you...

  • Personal history of one cancer reported in BAP1 cancer predisposition syndrome and family history of at least two 1st or 2nd degree relatives with hereditary BAP1 cancers such as uveal melanoma, cutaneous melanoma, mesothelioma, renal cell carcinoma, cholangiocarcinoma, meningioma, or hepatocellular carcinoma
  • Personal history of at least two cancers reported in hereditary BAP1 cancer predisposition syndrome
  • Any individual (affected or unaffected) with a documented pathogenic or likely pathogenic BAP1 variant
  • Any patient with a cancer reported in BAP1 and a germline variant of uncertain significance
  • At-risk relatives of a patient with a documented BAP1 mutation
Not Eligible

You will not qualify if you...

  • Non-English speaking subjects due to study materials and consent forms being available only in English

AI-Screening

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Your Study Journey

Screening

Duration - 2 to 4 weeks

Participants are screened for eligibility to participate in the trial.

1 visit (in-person)

Surveillance

Duration - Up to 10 years

Participants who have personal or family history suggestive of hereditary BAP1 are observed to identify clinical phenotypes and cancer risks.

Periodic visits depending on clinical findings

Trial Site Locations

Total: 1 location

1

The Ohio State University Wexner Medical Center

Columbus, Ohio, United States, 43210

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Research Team

M

Mohamed H Abdel-Rahman, MD, PhD

How is the study designed?

Study Type

OBSERVATIONAL

Masking

N/A

Allocation

N/A

Model

N/A

Primary Purpose

N/A

Number of Arms

2

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Frequently Asked Questions

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