Clinical trial · Observational
Uncertain Genetic Test Results for Lynch Syndrome
Living in Lynch Syndrome Limbo: Exploring the Meaning of Uncertain Genetic Test Results
- Source
- ClinicalTrials.gov
- Retrieved
- Sep 8, 2026
- Layer
- normalized (units and labels harmonized; values unchanged)
- Run
- ING-CLINICALTRIALS-20260908-000001
Summary
Brief summary (as posted)
Background: * Individuals have varying tolerances for receiving ambiguous information. However, not much is known about how ambiguous genetic testing information is received. Also, not much is known about how at-risk individuals internalize and process these results. More information is needed about how this information affects a person s life. * Lynch Syndrome is a genetic condition that carries a high risk of colon cancer and other cancers. Individuals at risk for Lynch Syndrome can have genetic testing for it. The test may confirm a diagnosis and determine actions that can be taken. Results from genetic testing can also affect the perspectives of relatives who might also be affected. However, genetic testing can also produce variants of unknown significance (VUS). VUS are data that may not provide enough information to make decisions. Researchers want to study people who have received a VUS result for genetic testing for Lynch Syndrome. Objectives: \- To learn more about the impact and experience of receiving a VUS for Lynch Syndrome genetic testing. Eligibility: \- Individuals at least 18 years of age who have recently had a VUS result on a genetic test for Lynch Syndrome. Design: * Participants will be asked to answer demographic questions. They will also have a 45- to 60-minute phone interview. * During the phone interview, participants will be asked a series of questions about their diagnosis. They will be asked about how they received the result and how they felt right after receiving it. They will also discuss who they have spoken to about the result.
Conditions
Conditions (1)
Free-text conditions as registered, with the CancerIndex entity they were reconciled to and the match type.
| Condition (as posted) | Mapped entity | Match | Confidence |
|---|---|---|---|
| HNPCC | — | UNRESOLVED | — |
Interventions
Interventions (0)
Data not yet available
Eligibility
Eligibility (as posted)
- Sex
- All
- Minimum age
- 18 Years
- Maximum age
- 100 Years
Show eligibility criteria text
* INCLUSION AND EXCLUSION CRITERIA: Individuals who have received a VUS for Lynch Syndrome must be over 18, have telephone access and speak English. Individuals will be excluded if they ve received their results less than 3 months earlier or more than 6 years ago.
References
Publications (3)
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- BACKGROUNDKresse A, Jacobowitz DM, Skofitsch G. Distribution of calcitonin gene-related peptide in the central nervous system of the rat by immunocytochemistry and in situ hybridization histochemistry. Ann N Y Acad Sci. 1992 Jun 30;657:455-7. doi: 10.1111/j.1749-6632.1992.tb22798.x. No abstract available. PMID 1637098
- BACKGROUNDBoks DE, Trujillo AP, Voogd AC, Morreau H, Kenter GG, Vasen HF. Survival analysis of endometrial carcinoma associated with hereditary nonpolyposis colorectal cancer. Int J Cancer. 2002 Nov 10;102(2):198-200. doi: 10.1002/ijc.10667. PMID 12385019