Actively Recruiting
Beliefs, Attitudes, and Response to Genetic Testing in Sarcoma Patients
Led by University of Utah · Updated on 2025-06-13
300
Participants Needed
1
Research Sites
N/A
Total Duration
On this page
Sponsors
U
University of Utah
Lead Sponsor
N
National Cancer Institute (NCI)
Collaborating Sponsor
AI-Summary
What this Trial Is About
Researchers are exploring the beliefs and attitudes of patients with leiomyosarcoma (LMS) and their family members toward the heritability of LMS and genetic testing. This observational study aims to understand how LMS patients perceive genetic risks, their interest in genetic testing, and the impact of receiving genetic information on patients and their families. The study also considers the challenges in communicating genetic test results during cancer treatment and seeks to improve support for family communication regarding genetic risks. The study includes two groups: LMS probands, who are the first in their families identified with a germline predisposition gene mutation related to LMS, and their relatives, with about four family members recruited per proband. Patients are identified through medical records and tumor registries. Participants will be assessed for their beliefs about LMS heritability and their interest in genetic testing. Genetic testing results focus on key genes such as TP53 and Rb1, which are linked to risks for various cancers beyond LMS. Participants will provide information shortly after enrollment about their beliefs and interest in genetic testing. The research will evaluate cognitive, emotional, and communication effects of genetic testing in patients with pathogenic variants. Family members' responses to genetic testing will also be studied. The study involves interviews and surveys to collect this data, with assessments occurring within one day of enrollment. This work is designed to enhance understanding of genetic risk communication and its effects in LMS families.
CONDITIONS
Brief Title
Beliefs, Attitudes, and Response to Genetic Testing in SarcomaPatients
Who Can Participate
Eligibility Criteria
You may qualify if you...
- LMS probands must have an actionable germline pathogenic variant detected in research
- Participants must be living
- No prior germline testing for this pathogenic variant
- Able to speak and read English
- Mentally competent
- Age 18 or older
- Relatives of LMS probands with 25-50% chance of inheriting the pathogenic variant
- No prior germline testing for this pathogenic variant
- Able to speak and read English
- Mentally competent
- Age 18 or older
You will not qualify if you...
- Under 18 years of age
- Unable to read or write
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Your Study Journey
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (in-person)
Duration - Up to 1 day from study enrollment
Participants receive genetic testing and assessments to explore beliefs, attitudes, and responses to genetic information.
1 visit (in-person)
Duration - Ongoing after diagnostic evaluation
Participants are observed to evaluate cognitive, affective, and communication outcomes after receiving genetic test results.
Additional assessments may occur depending on participant responses
Trial Site Locations
Total: 1 location
1
Huntsman Cancer Institute at the University of Utah
Salt Lake City, Utah, United States, 84112
Actively Recruiting
Research Team
G
Gregg Wood
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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