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 “right trial” and driving engaged traffic to registry/trial sites.
A growing group of 35+ organizations, ranging from academia to advocacy groups, are collaborating on this ground-breaking effort. The AD-PCPRN is part of a larger initiative called Galaxy, which is a hub of activity for patient-centered dementia research. As this effort gains momentum in the coming months, look for more information coming soon.
What makes this effort unique?
- Family caregivers are key research participants
- Data is shared BACK to the participant
- Continued involvement and engagement of participants after trial/study ends
Family Caregivers Included: This is a unique opportunity to validate the role of the family caregiver as research partner and study the longitudinal impact of caregiving on the health of Alzheimer’s and Dementia caregivers. Women are disproportionately impacted by this disease. According to the Shriver Report, sixty-five percent of all those with Alzheimer’s are women and sixty percent of caregivers for persons with Alzheimer’s are women. They will be a special focus of our recruiting efforts, in partnership with the FDA’s Office of Women’s Health.
I was relieved to see an article in the New York Times that relates the effects of caregiving to Post-Traumatic Stress Disorder (PTSD). Relieved, because people need to know. We owe it to our daughters to ensure they are not the next casualties of Alzheimer’s caregiving. Our goal is to make sure they don’t end up being the second patient in this insidious disease.
The AD-PCPRN and Galaxy will give power to patients’ and caregivers’ voices, making research more patient-centered and make a positive difference for Alzheimer’s families.
