Canavan Disease Clinical Trial
Official title:
Assessing the Outcomes of Web-based Pre-test Educational Module for Carrier Genetic Screening in Individuals of Ashkenazi Jewish Descent
Verified date | August 2017 |
Source | McGill University Health Center |
Contact | n/a |
Is FDA regulated | No |
Health authority | |
Study type | Interventional |
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:
1. 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.
2. 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.
Status | Completed |
Enrollment | 60 |
Est. completion date | August 2017 |
Est. primary completion date | April 2015 |
Accepts healthy volunteers | Accepts Healthy Volunteers |
Gender | All |
Age group | 18 Years and older |
Eligibility |
Inclusion Criteria: - At least one grandparent of Ashkenazi Jewish descent - Access to computer at home and computer literate Exclusion Criteria: - Participant or participant's partner is pregnant at time of study - Family history of an Ashkenazi Jewish genetic condition |
Country | Name | City | State |
---|---|---|---|
Canada | Montreal General Hospital (MUHC) | Montreal | Quebec |
Lead Sponsor | Collaborator |
---|---|
McGill University Health Center |
Canada,
Type | Measure | Description | Time frame | Safety issue |
---|---|---|---|---|
Primary | Knowledge of Ashkenazi Jewish genetic conditions | Evaluated by questionnaire developed specifically for this study. | 1 hour | |
Secondary | Patient anxiety | Evaluated by 6-item short form state trait anxiety inventory (Becker and Marteau 1992) | 1 hour | |
Secondary | Satisfaction with web-based/in-person genetic counselling | Assessed by questionnaire, developed from pre-existing genetic counselling research (Shiloh et al. 1990; Yip et al. 2003) | 1 hour | |
Secondary | Perceived risk of having a child with an Ashkenazi Jewish genetic condition | Evaluated by questionnaire developed specifically for this study. | 1 hour |
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