Evaluating the Efficacy of a Web-based Educational Module Prior to Carrier Genetic Screening in Individuals of Ashkenazi Jewish Descent.
The investigators have developed a new website to educate persons of Ashkenazi Jewish ancestry about their increased risk for having children with certain genetic conditions, and the genetic testing the investigators offer. This study aims to pilot the website to find out whether it is effective and to learn what the investigators can improve.
Participants in the study will be assigned to one of two conditions:
- Standard in-person genetic counselling session to learn about inheritance of Ashkenazi Jewish genetic conditions and genetic testing. Participants will fill out two short questionnaires, one before and one after the genetic counselling session. They will then be given a requisition form to undergo blood draw for genetic testing at the Montreal General Hospital test centre.
- Use of a web-based pre-test genetic counselling tool to learn about inheritance of Ashkenazi Jewish genetic conditions and genetic testing. They will fill out two short questionnaires, one before, and one after using the web-based tool. They will then be electronically sent a requisition form to undergo blood draw for genetic testing at the Montreal General Hospital test centre.
In both conditions, genetic test results will be communicated by telephone once they are available. Participants' genetic test results will not be used in any way for the study.
Tay Sachs Disease
Other: Online pre-test genetic counselling tool
|Study Design:||Allocation: Randomized
Intervention Model: Parallel Assignment
Masking: Open Label
Primary Purpose: Health Services Research
|Official Title:||Assessing the Outcomes of Web-based Pre-test Educational Module for Carrier Genetic Screening in Individuals of Ashkenazi Jewish Descent|
- Knowledge of Ashkenazi Jewish genetic conditions [ Time Frame: 1 hour ] [ Designated as safety issue: No ]Evaluated by questionnaire developed specifically for this study.
- Patient anxiety [ Time Frame: 1 hour ] [ Designated as safety issue: No ]Evaluated by 6-item short form state trait anxiety inventory (Becker and Marteau 1992)
- Satisfaction with web-based/in-person genetic counselling [ Time Frame: 1 hour ] [ Designated as safety issue: No ]Assessed by questionnaire, developed from pre-existing genetic counselling research (Shiloh et al. 1990; Yip et al. 2003)
- Perceived risk of having a child with an Ashkenazi Jewish genetic condition [ Time Frame: 1 hour ] [ Designated as safety issue: No ]Evaluated by questionnaire developed specifically for this study.
|Study Start Date:||January 2014|
|Estimated Primary Completion Date:||June 2014 (Final data collection date for primary outcome measure)|
|No Intervention: In-person counselling|
Active Comparator: Online pre-test genetic education tool
Use of a web-based pre-test education program, wherein the information from a typical genetic counselling session for carrier screening in Ashkenazi Jewish individuals is presented.
|Other: Online pre-test genetic counselling tool|
|Contact: Guillaume Sillon, MSc||514-934-1934 ext firstname.lastname@example.org|
|Contact: Sonja Rummell, BScemail@example.com|
|McGill University Health Centre||Not yet recruiting|
|Montreal, Quebec, Canada, H3G 1A4|
|Contact: Guillaume Sillon, MSc 514-934-1934 ext 43707 firstname.lastname@example.org|
|Contact: Sonja Rummell, BSc 604-315-2148 email@example.com|
|Principal Investigator:||Guillaume Sillon, MSc||McGill University Health Center|