Multi-Organ Screening Recommendations in Patients With Lynch Syndrome

Memorial Sloan Kettering Cancer Center (MSK)

Status: Active, not recruiting

Conditions: Lynch Syndrome

Treatments: Behavioral: questionnaires, telephone interview, optional blood drawn; Behavioral: questionnaires, telephone interview and optional blood drawn

Study type: Observational

Funder types: Other; NIH

Identifiers

NCT00582296

04-144

Details and patient eligibility

About

The purpose of this study is to examine how people with a family history of colon cancer and other related cancers respond to recommendations for cancer screening after genetic counseling. The purpose of your participation would be to help us learn more about whether people with a personal and/or family history of colorectal cancer and other cancers follow cancer screening recommendations.

Enrollment: 1,530 patients

Sex: All

Ages: 18+ years old

Volunteers: No Healthy Volunteers

Inclusion criteria

• A patient will be eligible for enrollment if he/she is self-referred or physician-referred for genetic counseling at Memorial Sloan-Kettering Cancer Center's (MSKCC) Clinical Genetics Service due to a concern about increased risk for colon cancer or;
• An individual who presents for genetic counseling at MSKCC's Clinical Genetics Service after undergoing genetic testing at an outside institution with a documented mutation in any gene associated with Lynch Syndrome or;
• An individual who in the context of genetic counseling has received stricter colorectal and/or gynecologic screening recommendations than that of the general population regardless of genetic test results.
• DNA of patients who have been consented to protocol 93-102 ("Ascertainment of Peripheral Blood or Saliva Samples for Genetic Epidemiology Studies of Familial Cancers"), who meet the eligibility criteria listed above, will also be eligible for inclusion in this study.

Exclusion criteria

• Patients will be excluded from this study if: he/she has physical, cognitive or psychiatric conditions that interfere with ability to give meaningful informed consent; he/she cannot read, write or communicate in English; he/she is less than 18 years of age; he/she has received a diagnosis of FAP.

Trial design

1,530 participants in 2 patient groups

1

Description:

multi-organ follow-up

Treatment:

Behavioral: questionnaires, telephone interview, optional blood drawn

2

Description:

control follow-up

Treatment:

Behavioral: questionnaires, telephone interview and optional blood drawn