The Genetics Update

Summary

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.

Conditions

• Genetic Diseases
• Genetic Disorders
• Cancer

Interventions

BEHAVIORAL

Genetics Update Platform plus standard genetic counselling

Patients in this arm will have continual access to the genetics update platform while they wait for the updated genomic sequencing results. The platform will provide access to relevant educational materials and eventually, results of their genetic tests.

BEHAVIORAL

Standard Genetic Counselling

Standard Genetic counseling to learn and understand results from genomic sequencing.

Sponsors & Collaborators

• Unity Health Toronto

  lead OTHER

Principal Investigators

• Yvonne Bombard, PhD · St. Michael's Hospital and University of Toronto

Study Design

Allocation

RANDOMIZED

Purpose

HEALTH_SERVICES_RESEARCH

Masking

NONE

Model

PARALLEL

Eligibility

Min Age

18 Years

Sex

ALL

Healthy Volunteers

No

Timeline & Regulatory

Start

2027-01-01

Primary Completion

2028-05-31

Completion

2028-12-31

Countries

• Canada

Study Locations