Web-Based Family Outreach Program for Cancer Prevention in High-Risk Families

NCT02337452 | Active Not Recruiting

• 3 other identifiers: 2014-0715NCI-2020-00567P30CA016672
• Study Type: observational
• Target: 10
• Locations: 1 country
• Sites: 1

Brief Summary

This trial develops a patient-driven self-navigated web-based family outreach program for cancer prevention in high-risk families. Creating the family outreach program may help to improve the way in which genetic test results are communicated within families and increase the number of at-risk relatives who become aware of their risks.

Conditions

Malignant Neoplasm

Outcome Measures

Primary Outcomes (1)

• Web-Based Family Outreach Registry

  Data analysis for core functions of the web-based Family Outreach Registry will generally be descriptive. Web-based program to improve the way in which genetic test results are communicated within families and to increase the number of at-risk relatives who become aware of their risks.

  Continual assessment of data over participant's life time (target follow-up duration: 40 Years)

Study Arms (1)

Observational (family outreach program)

Patients communicate with at-risk family members to share genetic test results and other relevant information, as well as to learn more about their disease via family outreach program website. At risk family members are then contacted by a study coordinator or genetic counselor for further follow up. At-risk relatives receive resources to facilitate understanding of their at-risk status and to facilitate predictive testing.

Other: Questionnaire Administration; Behavioral: Web Site

Interventions

Web Site BEHAVIORAL

Communicate via family outreach program website

Also known as: Internet Website, Website, www-website

Observational (family outreach program)

Questionnaire Administration OTHER

Ancillary studies

Observational (family outreach program)

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Participants with genetic abnormalities and their families at MD Anderson Cancer Center in Houston, Texas

You may qualify if:

• Individuals who have been diagnosed with a hereditary cancer-causing mutation. Individuals may be identified through clinical testing as patients at MD Anderson or patients whose mutation was identified at an outside institution who contact the registry
• Individuals that have clinical suspicion for syndromic cancer susceptibility, but in whom mutational testing has been nondiagnostic (depending on condition in question, nondiagnostic testing may be as little as 10%, as in familial adenomatous polyposis \[FAP\], or as high as 70% in suspected hereditary diffuse gastric cancer or HDGC)
• At-risk family members of individuals with a cancer causing mutation or of individuals with nondiagnostic testing notwithstanding presence of likely syndromic cancer. Such patients will in most cases not be MD Anderson patients. Note: The enrollment, consenting, and evaluation process anticipates and addresses this.

You may not qualify if:

• Index patients who test negative for a cancer causing mutation, except for those agreeing to provide family history (FH) that is informative for at-risk individuals when no other source of such information is available
• Patients who are unwilling or are unable to provide informed consent

Sponsors & Collaborators

• M.D. Anderson Cancer Center: lead
• National Cancer Institute (NCI): collaborator

Study Sites (1)

M D Anderson Cancer Center

Houston, Texas, 77030, United States

Location

Related Links

• MD Anderson Cancer Center Website

MeSH Terms

Conditions

Neoplasms

Study Officials

• Selvi Thirumurthi

  M.D. Anderson Cancer Center

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: FAMILY BASED
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: January 9, 2015
• First Posted: January 13, 2015
• Study Start: April 10, 2015
• Primary Completion (Estimated): April 30, 2048
• Study Completion (Estimated): April 30, 2048
• Last Updated: April 15, 2026

Record last verified: 2026-04

Locations

US (1)