Genetics Update Platform for Hereditary Diseases
What You Need to Know Before You Apply
What is the purpose of this trial?
Genomic sequencing (GS) can reveal thousands of genetic variants in each patient. As our understanding of these variants evolves, some may be reclassified, which could have significant implications for a patient's health. However, notifying patients about these changes is challenging and can lead to delays in their care. Patients often feel anxious while waiting for updates, especially when they know their results might change but aren't sure when or how it will affect them. To address this, a new study aims to develop and test a digital platform called "The Genetics Update." This platform will help keep patients informed about their genomic results in a timely manner, potentially reducing the stress and uncertainty that many experience. The study will compare this new approach to the traditional methods of providing updates, such as genetic counseling sessions and letters, to see which is more effective at reducing patient distress. As the use of genomic sequencing continues to grow, finding better ways to communicate updates will become increasingly important.
Who Is on the Research Team?
Yvonne Bombard, PhD
Principal Investigator
St. Michael's Hospital and University of Toronto
Are You a Good Fit for This Trial?
This trial is for people with hereditary diseases, genetic disorders, or cancer who have had genomic sequencing and want to stay updated about changes in their genetic results. There are no specific inclusion or exclusion criteria listed.Inclusion Criteria
Exclusion Criteria
What Are the Treatments Tested in This Trial?
Interventions
- Genetics Update Platform
Trial Overview
The study compares a new digital platform called 'The Genetics Update'—which provides timely updates on genetic test results—with standard methods like traditional genetic counseling sessions and letters.
How Is the Trial Designed?
2
Treatment groups
Experimental Treatment
Active Control
Arm Description: Participants in this intervention arm will be consented by the study coordinator and then use the Genetics Update platform to support the delivery of their updated genetic test results. Once their updated results are ready, participants will be notified via email and will use the patient platform to access their updated results and recommendations. All participants will have the option to request a meeting with a study genetic counsellor (GC) if needed. Participants who receive a pathogenic, likely pathogenic, or variant of uncertain significance as a result will have a mandatory virtual or telephone meeting with a genetic counsellor to discuss the result and follow up steps.
Arm Description: Participants in the control arm will be consented by the study coordinator. Once their results are ready, participants will receive their genetic testing result report through a password protected file via email. The genetic counsellor will be notified once the email has been opened. Participants will have been given the password during their consent process verbally. Should they have misplaced this, they can contact the study coordinator to request the password. If the participant does not open the email to review results, they will be contacted by the study coordinator via phone. Participants who receive a pathogenic, likely pathogenic, or variant of uncertain significance as a result will have a mandatory virtual or telephone meeting with a genetic counsellor to discuss the result and follow up steps.
Find a Clinic Near You
Who Is Running the Clinical Trial?
Unity Health Toronto
Lead Sponsor
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