Alzheimer Society of Canada launches important survey

Canada
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The new survey, open for a short time this fall, is designed to highlight the voices of people with Alzheimer’s disease and mild cognitive impairment in a national-agency process

Person using their smartphone.

The Alzheimer Society of Canada is encouraging people with Alzheimer’s disease and mild cognitive impairment—or those who care for them—to fill out an important new survey this fall.

The survey is available now until December 16th.

Respondents are being asked about the potential impact of a disease-modifying therapy.

And the information collected is vital: it will help amplify the voices of people with lived experience of Alzheimer’s disease and mild cognitive impairment in a national-agency drug review.

In this particular review, the Canadian Agency for Drugs and Technologies in Health will assess whether the drug aducanumab (also known as Aduhelm) has demonstrated value through objective evidence.

This agency assessment is not the only part of the drug review process in Canada. But it is one of the only parts where feedback from people living with a disease is welcome. And this feedback is usually coordinated through advocacy groups.

The Alzheimer Society of Canada is helping support an accurate and thorough drug review process in Canada by coordinating and collating feedback from people with lived experience of dementia and caregivers. This encourages a “Nothing about us, without us” approach to dementia drug reviews.

Anyone living with Alzheimer’s disease or mild cognitive impairment is encouraged to complete this particular survey.

The English survey is available at surveymonkey.com/r/aduhelmsurvey.

The French survey is available at fr.surveymonkey.com/r/sondageaduhelm.

Specific caregiver surveys are linked within each of these.

Anyone with questions about the survey is encouraged to email [email protected].

Note to the reader: This article was updated November 1, 2021, to reflect a refreshed survey deadline.