Introducing the National Alzheimer’s & Dementia Patient & Caregiver-Powered Research Network

The Alzheimer’s and Dementia Patient/Caregiver-Powered Research Network (AD-PCPRN), funded by the Patient Centered Outcomes Research Institute (PCORI), aims to accelerate the development of effective treatments for Alzheimer’s disease and related dementias through the collaboration of scientists and family caregivers. Suddenly, the trajectory of Alzheimer’s research has changed. The Patient Centered Outcomes Research Institute (PCORI) recently awarded a grant to fund the first Patient-Powered Research Network for Alzheimer’s disease and related dementias, the Alzheimer’s & Dementia Patient/Caregiver-Powered Research Network (AD-PCPRN). Now, there is a place at the table for individuals with Alzheimer’s, their family caregivers and the important information we have to share. This hits close to home for me. My husband and I have 3-out-of-4 parents who have struggled with various forms of dementia. We have been on the front lines of caregiving for 20 years. The Alzheimer’s & Dementia Patient/Caregiver-Powered Research Network (AD-PCPRN) is a collaboration to accelerate development of effective treatments for Alzheimer’s disease and related dementias.  Our goals are to amplify the Patient/Caregiver Voice in Alzheimer’s and Dementia Research, and broaden recruitment for Clinical Trials through Registries and Prevention Studies, with special focus on minority recruitment. Our focus is supporting recruitment of the “right patient” to the &#...
Source: Society for Participatory Medicine - Category: Journals (General) Authors: Tags: Newsletter AD-PCPRN Alzheimer's dementia Patient Centered Outcomes Source Type: news