Genetic care for ALS in Canada
Summary
In this study we are collecting information about access to genetic testing and genetic care for ALS in Canada. This is a questionnaire study in which we will collect demographic and health information. This will inform how genetic care for ALS is provided across Canada and whether there are opportunities to recommend additional training, support, or resources to certain regions.
Eligibility
Eligible ages: 18 to 100
Inclusion criteria:
People who have a diagnosis of ALS, or a suspected diagnosis of ALS, are eligible to participate.
Participation of this study requires reviewing and signing a consent form.
Participate
Fill out the following form if you want to participate in this research
UCalgary Notice of Collection
The University of Calgary (UCalgary) respects your privacy and is
committed to ensuring the privacy of all students, staff, and community members. Your personal information is being
collected under the authority of section 4(c) of the Protection of Privacy Act (POPA). It will be collected, used
and disclosed for the purposes outlined in UCalgary’s
Notice of
Collection, Use and Disclosure of Personal Information and managed in accordance with UCalgary’s
Privacy
Management Program.
Your personal information may be input into automated systems to generate content or make decisions,
recommendations, or predictions. If you have questions regarding this notice or UCalgary’s collection,
use, or disclosure of your personal information, please contact
accessandprivacy@ucalgary.ca.
Additional information
Contact information
Please use the email contact form to reach a member of the study team.
Principal investigator:
Gerald Pfeffer
Clinical trial:
No
REB-ID:
REB24-1659