Longitudinal Follow-Up Program for Cancer Syndromes

(LINC Trial)

Age: 18+
Sex: Any
Trial Phase: Academic
Sponsor: University of Vermont Medical Center
No Placebo GroupAll trial participants will receive the active study treatment (no placebo)

What You Need to Know Before You Apply

What is the purpose of this trial?

This trial examines how a follow-up program might help individuals with hereditary cancer syndromes adhere to their cancer screening and prevention plans, particularly in rural areas. The Longitudinal Cancer Genetics Follow-Up Program provides personalized care plans and regular check-ins to assess their impact on reducing patient distress and improving care coordination. Individuals with a known genetic mutation linked to cancer, diagnosed over a year ago, and able to complete surveys in English may qualify. The trial aims to enhance cancer care for those with hereditary risks, focusing on individuals living far from major medical centers. As an unphased trial, this study offers a unique opportunity to contribute to research that could improve cancer care for those with hereditary risks.

Will I have to stop taking my current medications?

The trial information does not specify whether you need to stop taking your current medications. It's best to discuss this with the trial coordinators or your doctor.

What prior data suggests that this program is safe for participants?

Research has shown that the Longitudinal Cancer Genetics Follow-Up Program serves individuals with inherited cancer conditions. It emphasizes regular check-ins with healthcare providers to manage cancer risk. While specific safety data for this program is unavailable, similar programs are usually well-tolerated. Participants will regularly visit a cancer genetics doctor and sometimes a genetic counselor, allowing for quick addressing of concerns. Based on existing healthcare practices, the program is generally considered safe for participants.12345

Why are researchers excited about this trial?

Researchers are excited about the Longitudinal Cancer Genetics Follow-Up Program because it offers a personalized approach to managing hereditary cancer syndromes. Unlike standard treatments that may focus purely on addressing active cancer, this program emphasizes ongoing surveillance and prevention tailored to each individual's genetic risk. Participants receive customized care plans and regular check-ins with specialists, which can improve adherence to recommendations and potentially reduce cancer-related stress. This proactive approach aims to enhance early detection and prevention, offering a more comprehensive, supportive experience for those at high genetic risk for cancer.

What evidence suggests that the Longitudinal Cancer Genetics Follow-Up Program is effective for improving adherence to cancer prevention and surveillance in patients with Hereditary Cancer Syndromes?

Research has shown that organized follow-up programs for individuals with hereditary cancer syndromes (HCS) can enhance cancer screening and prevention. In this trial, participants will join a Longitudinal Cancer Genetics Follow-Up Program, which provides regular, personalized care plans. Studies indicate that these care plans improve adherence to cancer screening guidelines, increasing the likelihood of participants keeping up with recommended tests and doctor visits. These programs also reduce stress and improve patients' perceptions of their care. Importantly, early detection and prevention of cancer are crucial for effectively managing hereditary cancer risks.16789

Are You a Good Fit for This Trial?

This trial is for adults over 18 with a known genetic change that increases cancer risk, identified by an approved lab more than a year ago. They must be able to understand and report their own health information, complete questionnaires in English, and give informed consent.

Inclusion Criteria

I am 18 years old or older.
I have a genetic mutation linked to cancer, found over a year ago.
I can accurately report my own health data.
See 2 more

Timeline for a Trial Participant

Screening

Participants are screened for eligibility to participate in the trial

2-4 weeks

Baseline Assessment

Participants complete baseline surveys and receive individualized care plans

1 visit
1 visit (in-person)

Longitudinal Follow-up

Participants are followed clinically with scheduled visits at 12 and 24 months to assess adherence, distress, and care coordination

24 months
3 visits (in-person) at baseline, 12 months, and 24 months

Follow-up

Participants are monitored for safety and effectiveness after the main follow-up period

4 weeks

What Are the Treatments Tested in This Trial?

Interventions

  • Longitudinal Cancer Genetics Follow-Up Program

Trial Overview

The study tests if a long-term follow-up program improves how well patients with Hereditary Cancer Syndromes stick to recommended cancer screenings and prevention plans. It also looks at the program's effect on patient stress and perception of care coordination.

How Is the Trial Designed?

1

Treatment groups

Experimental Treatment

Group I: Longitudinal Cancer Genetics Follow-Up ProgramExperimental Treatment1 Intervention

Find a Clinic Near You

Who Is Running the Clinical Trial?

University of Vermont Medical Center

Lead Sponsor

Trials
46
Recruited
25,900+

Citations

Strategy for Management of Patients With Hereditary ...

Participants will be enrolled in a structured, two-year longitudinal follow-up program designed for individuals with known hereditary cancer ...

Current and new frontiers in hereditary cancer surveillance

There is an opportunity for high-yield cancer early detection in HCS. To assess clinical validity of cfDNA in individuals with HCS, ...

Closing the GAPS: Guideline Adherence, Prevention and ...

The goal of this clinical trial is to see if a software platform can improve cancer screening in young adults with genetic risk for cancer.

a-comprehensive-cancer-risk-management-clinic-for- ...

Longitudinal care is provided by the Hereditary Cancer Clinic, and data are collected to track several outcomes. Outcomes include diagnosing a biallelic ...

Hereditary colorectal cancer screening: A 10-year ...

Results reported for 29/121 (24%) FPs and 98/297 (33%) patients who completed all 3 questionnaires. Over 10 years 2/3 patients received the correct CRC ...

6.

pubmed.ncbi.nlm.nih.gov

pubmed.ncbi.nlm.nih.gov/38935898/

Hereditary Cancer Screening and Outcomes at an Urban ...

Purpose: Patients with hereditary cancer syndromes (HCS) have a high lifetime risk of developing cancer. Historically underserved populations have lower ...

Implementing genetics clinic for hereditary cancer in resource ...

One of the most critical weaknesses identified in the literature is the lack of longitudinal and outcome-focused evaluations of genetic clinics.

Inherited Cancer Syndromes | EGRP/DCCPS/NCI/NIH

Research is ongoing to develop, test, and implement evidence-based strategies to identify those at risk for inherited cancer syndromes and ...

In Our Scope of Practice: Genetic Risk Assessment and ...

This review addresses current evidence and guidelines for cancer risk assessment, genetic testing, and management to enable gastrointestinal clinicians to ...