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
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.
In Montreal, individuals of Ashkenazi Jewish descent are eligible to have carrier screening
for three genetic conditions: Tay-Sachs disease, Canavan disease, and familial dysautonomia.
The investigators have developed a new website to educate persons of Ashkenazi Jewish
ancestry about their increased risk for having children with these 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. Specifically, the
investigators will measure knowledge acquisition, level of anxiety, and degree of
satisfaction with their experience.
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. These
questionnaires assess demographic information, knowledge regarding the three genetic
conditions listed above, feelings and anxiety levels, e-health literacy, and overall
satisfaction. 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. These questionnaires
are similar to those in the condition above, except there will also be questions
regarding the utility of the web-based tool and ways to improve the tool. Participants
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.
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