2020 Postcard from Palm Springs
Highlights from the 2020 CHDI HD Therapeutics Conference are now here! This year’s Postcard covers HTT-lowering therapeutics, including an
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: firstname.lastname@example.org
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:
Are you looking for support resources or information on HD, or do you know someone who is? Please reach out via our new online link and a member of our Family Services team will be in touch: https://contactme.cloud/form/huntingtonsociety
Prefer to talk to someone directly? Please call 1-800-998-7398 and enter the extension of the Family Services team member closest to you: www.huntingtonsociety.ca/family-services-team-list/
We are here for you and we hope to connect with you soon!