A Social Media Approach to Improve Genetic Risk Communication Phase I
This study is currently recruiting participants.
Verified June 2013 by M.D. Anderson Cancer Center
Sponsor:
M.D. Anderson Cancer Center
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 13, 2013
Last verified: June 2013
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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. 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. 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:
- At least 18 years of age
- Able to read and speak english
- Completion of genetic counseling and testing for a Lynch syndrome mutation
- Persons with positive (i.e., carrier of Lynch syndrome MMR mutation) as well as indeterminate test results
Exclusion Criteria:
1) None
Contacts and Locations
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 13, 2013 |
| 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 June 18, 2013