Efficacy Study of an Online Educational Module Before Carrier Genetic Screening in Persons of Ashkenazi Jewish Descent.
NCT01999257 · Status: COMPLETED · Phase: NA · Type: INTERVENTIONAL · Enrollment: 60
Last updated 2017-08-17
Summary
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.
Conditions
- Tay Sachs Disease
- Canavan Disease
- Familial Dysautonomia
Interventions
- OTHER
-
Online pre-test genetic education tool
See Arm Descriptions above.
Sponsors & Collaborators
-
McGill University Health Centre/Research Institute of the McGill University Health Centre
lead OTHER
Principal Investigators
-
Guillaume Sillon, MSc · McGill University Health Centre/Research Institute of the McGill University Health Centre
Study Design
- Allocation
- RANDOMIZED
- Purpose
- HEALTH_SERVICES_RESEARCH
- Masking
- NONE
- Model
- PARALLEL
Eligibility
- Min Age
- 18 Years
- Sex
- ALL
- Healthy Volunteers
- Yes
Timeline & Regulatory
- Start
- 2014-07-31
- Primary Completion
- 2015-04-30
- Completion
- 2017-08-31
Countries
- Canada
Study Locations
More Related Trials
-
Efficacy of Personal Pharmacogenomic Testing as an Educational Tool in the Pharmacy Curriculum
NCT04889014 ·Status: COMPLETED ·Phase: NA
-
Physicians' Understanding of Human Genetic Variation
NCT00339924 ·Status: COMPLETED
-
Genetics of Primary Ciliary Dyskinesia
NCT02389049 ·Status: COMPLETED
-
Clinical Implementation of Carrier Status Using Next Generation Sequencing
NCT01902901 ·Status: COMPLETED ·Phase: NA
-
GenetiKiT: Evaluation of an Educational Intervention on the Delivery of Genetics Services by Family Physicians
NCT00295529 ·Status: COMPLETED ·Phase: NA
-
Educational Video for Genetic Testing
NCT05472714 ·Status: COMPLETED ·Phase: NA
-
The Genetics Navigator: Evaluating a Digital Platform for Genomics Health Services
NCT06455384 ·Status: RECRUITING ·Phase: NA
-
Pharmacogenetic Testing in Primary Care
NCT01600846 ·Status: COMPLETED
-
Identification and Characterization of Novel Non-Coding Variants That Contribute to Genetic Disorders
NCT04399694 ·Status: COMPLETED
-
Genetics of Cardiovascular and Neuromuscular Disease
NCT00138931 ·Status: RECRUITING
-
Next Generation to Identify Genetic Causes of Disease in Patients Participating in NICHD Clinical Protocols
NCT01375543 ·Status: COMPLETED
-
UW Undiagnosed Genetic Diseases Program
NCT04586075 ·Status: RECRUITING
-
North Carolina Genomic Evaluation by Next-generation Exome Sequencing, 2
NCT03548779 ·Status: COMPLETED ·Phase: NA
-
Study of Glycogen Storage Disease Expression in Carriers
NCT02057731 ·Status: COMPLETED
-
Experiences of Genetics Patients With Visible Abnormalities Who Facilitate Teaching in Genetics Clinics
NCT00341718 ·Status: COMPLETED
-
Mackenzie's Mission: The Australian Reproductive Carrier Screening Project
NCT04157595 ·Status: COMPLETED ·Phase: NA
-
Is Family Screening Improved by Genetic Testing of Familial Hypercholesterolemia
NCT04526457 ·Status: COMPLETED ·Phase: NA
-
Adult Patients With Undiagnosed Conditions and Their Responses to Clinically Uncertain Results From Exome Sequencing
NCT03605004 ·Status: COMPLETED
-
Clinical Trial of the Sequence of Cardiovascular Genetic Counseling and Testing
NCT05422573 ·Status: ENROLLING_BY_INVITATION ·Phase: NA
-
Clinical and Genetic Evaluation of Individuals With Undiagnosed Disorders Through the Undiagnosed Diseases Network
NCT02450851 ·Status: RECRUITING
-
Refining Information Technology Support for Genetics in Medicine
NCT01225978 ·Status: UNKNOWN
-
Genetic Information Assistant in Telegenetics
NCT06089421 ·Status: RECRUITING ·Phase: NA
-
Clinical Presentation of Genetic Disorders in Patients Attending Genetic Outpatient Clinic of Assiut University Children Hospital
NCT05888155 ·Status: UNKNOWN
-
Genetic Analysis of Uncommon Disease Presentations in Non-US Populations
NCT06595940 ·Status: RECRUITING
-
Transition From Research to Disclosure in Human Genetics
NCT00505466 ·Status: COMPLETED