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HD Predictive Testing Survey


January 31st, 2022

Dear HSC Community Member: 

The Huntington Society of Canada (HSC) is working in collaboration with the Centre for Huntington Disease at University of British Columbia to estimate the number of people who choose to participate or not in predictive testing by individuals affected by Huntington disease (HD), based on clinical trial results.

Title of Survey: The effects of clinical trial results on predictive testing uptake – an online survey of individuals affected by Huntington’s disease

Principal Investigator is Dr. Blair R. Leavitt, University of British Columbia Vancouver, BC. Canada email: bleavitt@cmmt.ubc.ca

The survey aims to help decision makers and healthcare providers (including. clinicians, genetic counselors, and HSC) better prepare for a potential surge in predictive testing requests. This preparation will in turn improve the quality of care.

If you are a person living at risk for the HD gene mutation, have recently undergone predictive testing, or have chosen to postpone the process, you are invited to participate in this research study.

If you choose to participate, you will be asked a few questions about your experience in making the decision to access predictive testing or not.

This survey will take approximately 15 minutes to complete.

Please note that only information required for this study will be collected and all responses collected will remain confidential and anonymous. The survey will be open for 6 months, or until 200 responses have been received. We thank you in advance for your participation.

Please follow this link:

https://medlior.ca1.qualtrics.com/jfe/form/SV_08238ubbi0BNoc6


 

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