Trial record 13 of 1680 for:    Open Studies | "Genetic Diseases, Inborn"

A Social Media Approach to Improve Genetic Risk Communication Phase I

This study is currently recruiting participants. (see Contacts and Locations)
Verified June 2014 by M.D. Anderson Cancer Center
Sponsor:
Collaborator:
Duncan Family Institute
Information provided by (Responsible Party):
M.D. Anderson Cancer Center
ClinicalTrials.gov Identifier:
NCT01645904
First received: July 18, 2012
Last updated: June 19, 2014
Last verified: June 2014
  Purpose

The goal of this research study is to create an internet-based program designed to improve the communication of health and health history information among family members affected by Lynch syndrome.


Condition Intervention Phase
Hereditary Diseases
Behavioral: Audiotaped Focus Group
Behavioral: Demographic Questionnaire
Behavioral: Audiotaped Interview
Behavioral: WAMMI Inventory
Phase 1

Study Type: Observational
Study Design: Observational Model: Family-Based
Time Perspective: Prospective
Official Title: A Social Media Approach to Improve Genetic Risk Communication Phase I

Resource links provided by NLM:


Further study details as provided by M.D. Anderson Cancer Center:

Primary Outcome Measures:
  • Evaluation of Internet-Based Program Among Lynch Syndrome Family Members [ Time Frame: 1 day ] [ Designated as safety issue: No ]
    Quantitative analysis include descriptive statistics summarizing participants' demographic and clinical characteristics. Descriptive statistics calculated for each subscale of Website Analysis and MeasureMent Inventory (WAMMI) and for overall measure. Focus groups and interviews transcribed, coded and analyzed. Responses sorted into categorical and conceptual groups, field notes taken during user testing also used to aid in interpretation of interview data.


Estimated Enrollment: 49
Study Start Date: February 2013
Estimated Primary Completion Date: February 2016 (Final data collection date for primary outcome measure)
Groups/Cohorts Assigned Interventions
Group 1
Patients participate in audiotaped focus group regarding web-based program, and fill out demographics questionnaire.
Behavioral: Audiotaped Focus Group
Participation in a focus group regarding web-based program designed to improve communication of health and health history information among family members affected by Lynch syndrome.
Behavioral: Demographic Questionnaire
Complete questions about demographics (age, race, marital status) and medical history. This visit should take about 1 hour to complete.
Other Name: Surveys
Group 2
Patients come to Behavioral Research and Treatment Center (BRTC) at MD Anderson to use initial version of My Family Garden website. Completion of Website Analysis and MeasureMent Inventory (WAMMI), and demographics questionnaires.
Behavioral: Demographic Questionnaire
Complete questions about demographics (age, race, marital status) and medical history. This visit should take about 1 hour to complete.
Other Name: Surveys
Behavioral: Audiotaped Interview

Group 2: Patients provide feedback regarding initial version of My Family Garden website.

Group 3: Patients provide feedback regarding final version of My Family Garden website.

Behavioral: WAMMI Inventory
Patients complete Website Analysis and MeasureMent Inventory. This visit should take about 90 minutes to complete.
Group 3
Patients use final version of My Family Garden website, and are interviewed which will be audiotaped. Completion of Website Analysis and MeasureMent Inventory (WAMMI), questionnaire and demographics questionnaire.
Behavioral: Demographic Questionnaire
Complete questions about demographics (age, race, marital status) and medical history. This visit should take about 1 hour to complete.
Other Name: Surveys
Behavioral: Audiotaped Interview

Group 2: Patients provide feedback regarding initial version of My Family Garden website.

Group 3: Patients provide feedback regarding final version of My Family Garden website.

Behavioral: WAMMI Inventory
Patients complete Website Analysis and MeasureMent Inventory. This visit should take about 90 minutes to complete.

  Show Detailed Description

  Eligibility

Ages Eligible for Study:   18 Years and older
Genders Eligible for Study:   Both
Accepts Healthy Volunteers:   Yes
Sampling Method:   Non-Probability Sample
Study Population

Participants recruited from Lynch syndrome families enrolled in the Human Pedigree Analysis Resource (HPAR), MDACC's hereditary cancer registry.

Criteria

Inclusion Criteria:

  1. At least 18 years of age
  2. Able to read and speak english
  3. Completion of genetic counseling and testing for a Lynch syndrome mutation
  4. Persons with positive (i.e., carrier of Lynch syndrome MMR mutation) as well as indeterminate test results

Exclusion Criteria:

1) None

  Contacts and Locations
Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the Contacts provided below. For general information, see Learn About Clinical Studies.

Please refer to this study by its ClinicalTrials.gov identifier: NCT01645904

Contacts
Contact: Susan Peterson, PHD, MPH 713-792-8267

Locations
United States, Texas
UT MD Anderson Cancer Center Recruiting
Houston, Texas, United States, 77030
Sponsors and Collaborators
M.D. Anderson Cancer Center
Duncan Family Institute
Investigators
Principal Investigator: Susan Peterson, PHD,MPH UT MD Anderson Cancer Center
  More Information

Additional Information:
No publications provided

Responsible Party: M.D. Anderson Cancer Center
ClinicalTrials.gov Identifier: NCT01645904     History of Changes
Other Study ID Numbers: 2012-0418
Study First Received: July 18, 2012
Last Updated: June 19, 2014
Health Authority: United States: Institutional Review Board

Keywords provided by M.D. Anderson Cancer Center:
Hereditary Diseases
Genetic
Lynch syndrome
Positive or indeterminate test results for Lynch syndrome
Social media
Internet-based program
Questionnaire
Survey
My Family Garden website
Interview
Focus group
Website Analysis and MeasureMent Inventory
WAMMI

Additional relevant MeSH terms:
Genetic Diseases, Inborn

ClinicalTrials.gov processed this record on October 21, 2014