An interventional study of Online pre-test genetic education tool in Tay Sachs Disease, Canavan Disease and Familial Dysautonomia, sponsored by McGill University Health Centre/Research Institute of the McGill University Health Centre. Completed at 1 site in Canada. Open to participants aged 18 Years and older, including healthy volunteers. Per ClinicalTrials.gov, last updated 2017-08-17.
Sponsored by McGill University Health Centre/Research Institute of the McGill University Health Centre · Not applicable, Interventional, and Health services research
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:
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:
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.
166 studies on the registry are indexed under Autonomic Nervous System Diseases; 36 are open to participants now.
This study's planned enrollment of 60 is above the median of 40 across 107 interventional studies indexed under Autonomic Nervous System Diseases.
Browse Autonomic Nervous System Diseases studies →McGill University Health Centre/Research Institute of the McGill University Health Centre is the lead sponsor of 414 studies on the registry; 106 are open to participants now.
Counted across the registry records on this site, refreshed daily.
Exclusion Criteria:
Similar to standard of care, wherein Ashkenazi Jewish individuals seeking carrier genetic screening meet a genetic counsellor for an in-person education and counselling session.
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 education tool
See Arm Descriptions above.
Knowledge of Ashkenazi Jewish genetic conditions
Evaluated by questionnaire developed specifically for this study.
Time frame: 1 hour
Patient anxiety
Evaluated by 6-item short form state trait anxiety inventory (Becker and Marteau 1992)
Time frame: 1 hour
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)
Time frame: 1 hour
Perceived risk of having a child with an Ashkenazi Jewish genetic condition
Evaluated by questionnaire developed specifically for this study.
Time frame: 1 hour
Plan to share: Yes — Publication of study results in a peer-reviewed journal.
No publications or documents are linked to this record.
This study is completed, as verified in Aug 2017. You cannot join it, but the record below documents what was studied.
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Autonomic Nervous System Diseases→
McGill University Health Centre/Research Institute of the McGill University Health Centre