RTI-HS researcher to lead study that will seek perspectives of those affected by Alzheimer’s

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Understanding What Matters Most to Alzheimer's patients and their caregivers to help inform the drug development process.

The Alzheimer’s Disease Patient and Caregiver Engagement (AD PACE) initiative is a first-of-its-kind collaboration among pharmaceutical companies, advocacy organizations, academic institutions and care services companies to understand which treatment-related outcomes matter to individuals with Alzheimer’s and their caregivers and to use that information to develop treatments that can help improve patients’ lives. 

AD PACE Alzheimer's organizationBrett Hauber, PhD, Senior Economist and VP of Health Preference Assessment at RTI-HS, will lead the AD PACE What Matters Most study that is the first phase of this initiative. The study will be conducted in two parts and will focus on first identifying and then quantifying the treatment-related needs, preferences, and priorities of those living with and affected by Alzheimer’s disease. To connect with the people closest to the disease, AD PACE has created the A-LIST. This growing online community of over 6,000+ members includes those living with Alzheimer’s disease, other dementias, and mild cognitive impairment, as well as their current and former caregivers and those at risk for developing any of these conditions.

With the scientifically-rigorous data from the study, drug developers will have a better understanding of outcomes that are meaningful to patients and caregivers as well as the tradeoffs they are willing to make. The data will also be useful to inform the regulatory approval process, payment and reimbursement decisions, and care and services.

You can learn more about the AD PACE initiative, watch the recording of the launch announcement, and learn how you can join the A-LIST by visiting the UsAgainstAlzheimers website.

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