The National Alzheimer's & Dementia Patient & Caregiver-Powered Research Network
The National Alzheimer’s & Dementia Patient & Caregiver-Powered Research Network (AD PCPRN) is made up of participants who have, are at risk for having, or care for someone who has Alzheimer’s disease (AD) or dementia. The overall goal of this project is to accelerate development of effective treatments for AD and related dementias. The AD PCPRN is powered by patients and their caregivers and led by USAgainstAlzheimer’s (USA2) through its family of patient and caregiver networks, the Mayo Clinic, and the University of California-San Francisco’s Brain Health Registry.
Today, 5 million Americans suffer from AD. This number will grow to 15 million by 2050. Despite this enormous and growing burden, there are no treatments proved to modify the course of this disease. Among Americans over age 70, 16 percent are in the stage of AD before symptoms develop, known as mild cognitive impairment, presenting an opportunity to stop progression of the disease.
This national network will connect patients, caregivers, and researchers focused on developing, conducting, and disseminating patient-centered dementia research. The AD PCPRN will enroll an increasingly large number of individuals into this patient-centered network through existing web-based registries. These web-based registries allow for the collection of measures of cognition at baseline and over time, and of self-reported information such as a patient’s or caregiver’s sense of quality of life, the outcomes they are experiencing with any new intervention, and the risks they are willing to bear in clinical trials going forward. The AD PCPRN will also screen and refer individuals for clinical trials as well as facilitate patient-focused studies.
Particular attention will be given to involvement and recruitment of patients and caregivers who are African American or Latino, as both groups have higher rates of AD and related dementias than whites and are also underrepresented in clinical research. Further, this project will support the conduct of research concerning the impact of dementia on caregivers, and aim to lead to interventions that reduce the adverse effects on caregiver health. These goals will be achieved through collaborations with patients, patient advocacy groups, AD research teams, and industry partners developing diagnostics and treatments for dementia.
The AD PCPRN will be led by the Network Governance Board (NGB), a committee of patients, caregivers, leaders of patient groups, directors of existing patient registries, clinical data research network and patient-powered research network collaborators, and clinical studies representatives. The NGB will provide input into performance and serve as a checkpoint for accountability for the Principal Investigators under the terms of the contract. They will be asked to engage in outreach through their respective networks to expand reach and impact of the AD PCPRN. Additionally, USA2 will solicit input from its network of individuals living with or at high risk of getting Alzheimer’s in order to form a focus group to advise the NGB. The focus group will include individuals living with AD, individuals with a high genetic risk of developing AD, and caregivers.
To help advance the network’s goals, including outreach, recruitment, and retention of clinical trial participants, the AD PCPRN will collaborate with a range of federally funded clinical research initiatives and will apply for additional public and private funding opportunities.
With 15 million Americans expected to suffer from AD and related dementias, it is essential that effective treatments be developed as soon as possible. By enrolling individuals at risk for and with AD and their caregivers into this patient-centered network, collecting self-reported information, and screening and referring individuals for clinical trials, the AD PCPRN will be able to incorporate participants’ perspectives and preferences to the clinical trial process as well as provide valuable information on brain and overall health, thus accelerating the development process.
View more about this project on PCORnet.org.
^ Glenn E. Smith, PhD, was the original principal investigator for this project.
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