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Patient Views on Genetic Testing for Leiomyosarcoma

Studies patient beliefs and attitudes about genetic testing in people with leiomyosarcoma.

Key facts

Who runs it
University of Utah
Where
Salt Lake City, United StatesSee the site
Trial code
Registry title
Beliefs, Attitudes, and Response to Genetic Testing in SarcomaPatients
Status
Recruiting
People taking part
300 people, planned
Started
9 Jul 2024
Expected to end
Aug 2027
Type of study
Observational, 2 groups
Record updated
13 June 2025

Who can take part

AI summary

From the trial's eligibility criteria. Machine-read from the registry text on this page, so it can be wrong. The registry text below and the trial team decide who can take part.

The trial is looking for adults with leiomyosarcoma (a soft tissue cancer) in whom research found an inherited gene change, and for their close relatives. All must read and speak English.

Age
18 years or older
Sex
All sexes can join
Disease stage
Leiomyosarcoma patients, or relatives with a 25-50% chance of having inherited the gene change
Earlier treatment
No earlier genetic (germline) testing for this gene change
Biomarker or test result
Patients: an actionable germline pathogenic variant (inherited gene change) found in the research setting. Relatives: a 25-50% chance of having inherited it.

Main reasons for not taking part

  • Under 18 years
  • Unable to read or write
  • Cannot speak and read English
  • Not mentally competent
  • Patients who are no longer living

The registry criteria, word for word

Show all 14 criteriaShow less

Other criteria

  • Inclusion LMS Proband
  • Actionable germline PV detected in the research context
  • Living
  • No prior germline testing for this PV
  • Able to speak and read English
  • Mentally competent
  • Age 18 or older; Relative of LMS Proband
  • 25-50% chance for having inherited the PV
  • No prior germline testing for this PV
  • Able to speak and read English
  • Mentally competent
  • Age 18 or older; Exclusion (both cohorts)
  • <18 years
  • Unable to read or write

Where in United States

  • Huntsman Cancer Institute at the University of UtahSalt Lake City, United StatesContact: Wendy K Kohlmann, MSTaking people

About the trial

What the trial wants to find out

Genomic research has shown that a portion of leiomyosarcomas can be attributed to an underlying cancer predisposition syndrome. However, the optimal approach for incorporating germline testing into the care of these patients. This study is assessing the beliefs about the heritability of leiomyosarcoma and other cancer risks, and attitudes towards germline testing among leiomyosarcoma patients.

The 2 groups in the trial

  • LMS Probands

    LMS Probands are the first person in a family to be known to have a germline predisposition gene mutation in LMS. A cohort of patients with a histologically confirmed leiomyosarcoma diagnosis will be prospectively recruited from two SPORE prospective biomarker studies.

  • Relative of LMS Probands

    Relatives to LMS probands will be enrolled in this cohort. Approximately 4 family members per proband will be recruited.

Questions to ask the study team

  1. How often do I need to come in, and for how long each time?
  2. Are travel costs paid?
  3. Can I keep my own doctor?
  4. What happens if I want to stop?

Contact the study team: see the registry record → Contacts and Locations

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Data and sources

Registry record
Listed on ClinicalTrials.gov.
Official title
Beliefs, Attitudes, and Response to Genetic Testing in Sarcoma Patients
Plain-language title
Patient Views on Genetic Testing for LeiomyosarcomaGenerated from the registry record. The registry title is the official one.
AI summary
From the trial's eligibility criteria. Read by machine on 12 November 2026.
Record updated
13 June 2025