Beliefs, Attitudes, and Response to Genetic Testing in SarcomaPatients

Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
Age18+
SponsorUniversity of Utah

About this trial

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.

Eligibility criteria

This trial accepts healthy volunteers

Qualifiers

Actionable germline PV detected in the research context

Living

No prior germline testing for this PV

Able to speak and read English

Disqualifiers

None

Trial population

The study population will be Patients with a confirmed or suspected diagnosis of LMS and Relatives of LMS patients.

Trial design

Design model

Family-based

Time perspective

Prospective

Treatments tested in this trial

Not listed

Trial groups

300 Participants
are grouped into 2 trial groups
Group A: LMS Probands
Group B: Relative of LMS Probands

Trial outcomes

Primary outcomes

1

Beliefs about the heritability of Leiomyosarcoma

This outcome will report the count of participants who self-reported a strong belief in heritability. Participants who responded on a questionnaire that sarcoma is somewhat or highly heritable are considered to have a strong belief in heritability. This outcome measure will be assessed on Day 1 of the study.

Time frame
up to 1 day from study enrollment

Secondary outcomes

1

Interest in germline genetic testing

This outcome will report the count of participants who self-reported an interest in germline genetic testing. This will report the number of participants who respond on a baseline questionnaire that they are interested in having a genetic test related to cancer risk.

Time frame
up to 1 day from study enrollment

Other outcomes

1

Uptake in germline genetic testing

This outcome will report the count of participants who proceed with germline genetic testing. Participants will be asked on their baseline questionnaire if they have completed germline genetic testing.

Time frame
up to 1 day from study enrollment
2

Preferences for receiving information about germline testing

This outcome will report the count of participants who self-reported sources for genetic testing information as helpful. Participants will rank questions about sources of information from "1 Not helpful at all" to "6 Extremely helpful" on their baseline questionnaire. Participants who reported \>5 on this scale are considered to have found the source for genetic testing information as helpful. This outcome will assess information presented in tables and graphs and information presented numerically.

Time frame
up to 1 day from study enrollment

Sponsors and contacts

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University of Utah

Lead sponsor

National Cancer Institute (NCI)

Collaborator

University of New South Wales

Collaborator

University of Michigan

Collaborator