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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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| In-person counselling | No Intervention | 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. | |
| Online pre-test genetic education tool | Active Comparator | 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. |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Online pre-test genetic education tool | Other | See Arm Descriptions above. |
|
| Measure | Description | Time Frame |
|---|---|---|
| Knowledge of Ashkenazi Jewish genetic conditions | Evaluated by questionnaire developed specifically for this study. | 1 hour |
| Measure | Description | Time Frame |
|---|---|---|
| Patient anxiety | Evaluated by 6-item short form state trait anxiety inventory (Becker and Marteau 1992) | 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) |
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Inclusion Criteria:
Exclusion Criteria:
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| Name | Affiliation | Role |
|---|---|---|
| Guillaume Sillon, MSc | McGill University Health Centre/Research Institute of the McGill University Health Centre | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Montreal General Hospital (MUHC) | Montreal | Quebec | H3G 1A4 | Canada |
Publication of study results in a peer-reviewed journal.
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| 1 hour |
| Perceived risk of having a child with an Ashkenazi Jewish genetic condition | Evaluated by questionnaire developed specifically for this study. | 1 hour |
| ID | Term |
|---|---|
| D013661 | Tay-Sachs Disease |
| D017825 | Canavan Disease |
| D004402 | Dysautonomia, Familial |
| ID | Term |
|---|---|
| D020143 | Gangliosidoses, GM2 |
| D005733 | Gangliosidoses |
| D013106 | Sphingolipidoses |
| D020140 | Lysosomal Storage Diseases, Nervous System |
| D020739 | Brain Diseases, Metabolic, Inborn |
| D001928 | Brain Diseases, Metabolic |
| D001927 | Brain Diseases |
| D002493 | Central Nervous System Diseases |
| D009422 | Nervous System Diseases |
| D008661 | Metabolism, Inborn Errors |
| D030342 | Genetic Diseases, Inborn |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |
| D008064 | Lipidoses |
| D008052 | Lipid Metabolism, Inborn Errors |
| D016464 | Lysosomal Storage Diseases |
| D008659 | Metabolic Diseases |
| D009750 | Nutritional and Metabolic Diseases |
| D052439 | Lipid Metabolism Disorders |
| D020279 | Hereditary Central Nervous System Demyelinating Diseases |
| D056784 | Leukoencephalopathies |
| D003711 | Demyelinating Diseases |
| D020271 | Heredodegenerative Disorders, Nervous System |
| D019636 | Neurodegenerative Diseases |
| D054969 | Primary Dysautonomias |
| D001342 | Autonomic Nervous System Diseases |
| D009477 | Hereditary Sensory and Autonomic Neuropathies |
| D009421 | Nervous System Malformations |
| D011115 | Polyneuropathies |
| D010523 | Peripheral Nervous System Diseases |
| D009468 | Neuromuscular Diseases |
| D000013 | Congenital Abnormalities |
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