National Alzheimer's & Dementia Patient- & Caregiver-Powered Research Network

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PCORI funded the development of PCORnet^®, the National Patient-Centered Clinical Research Network, to make it easier and more efficient to conduct research. PCORnet is made up of Partner Networks that harness the power of large amounts of health data and patient partnerships.

Patient-Powered Research Networks (PPRNs) are networks operated and governed by patients, families, caregivers, and community members in close collaboration with clinical researchers, with the goal of shaping and conducting research to better serve their communities and improve their health outcomes. Several PPRNs, including the National Alzheimer’s & Dementia Patient- & Caregiver-Powered Research Network (AD PCPRN), participated as Partner Networks in PCORnet.

PCORI funded AD PCPRN’s participation in PCORnet from 2015 to 2018. This report outlines PCPRN’s achievements in building its research infrastructure capacity to

1. Create ways to involve patients, families, and caregivers in decision making about the network
2. Create a way to collect and share data reported by patients for research
3. Involve patients, caregivers, families, and communities in the research process, including recruiting people to participate in research studies
4. Lead or join in research studies that focus on the community’s priorities

Network at a glance

AD PCPRN is a PPRN made up of people who have, are at risk for, or care for someone who has Alzheimer’s disease or another type of dementia. Alzheimer’s disease, or AD, is a type of dementia that causes problems with memory, thinking, and behavior. Dementia is not a normal part of aging.

The network is led by Mayo Clinic and works with UsAgainstAlzheimer’s, a nonprofit organization dedicated to stopping Alzheimer’s by 2020; the University of California San Francisco Brain Health Registry; and the University of Florida. The network had 46,433 participants as of March 2019. The network connected patients, caregivers, researchers, and patient advocates. Their common goal was to collect information from patients and caregivers, recruit individuals for AD research, and incorporate the perspectives of caregivers and patients into this research.

How does the network operate?

The AD PCPRN established a network governance board and four advisory councils to lead the network. The board included AD PCPRN leadership, lead researchers, and patient representatives. Advisory councils focused on patients and caregivers, communications, diversity, and research.

The network collected information about patients and caregivers and recruited participants for clinical studies through the Brain Health Registry. The registry is an online site that collects information from participating patients on health, lifestyle, and mental function using surveys and computerized tests. Participants return to the site every six months to update information and take more computer-based tests.

People with AD and other types of dementia participating in the registry chose a study partner to help them answer survey questions about their brain health, day-to-day functioning, and quality of life. These study partners could be a relative, friend, or caregiver. Study partners who were also caregivers could share information about their own experiences and quality of life.

How did the network involve patients and other partners?

The network governance board and advisory councils included patients and caregivers. They developed research questions, helped design research studies, and helped get the word out about research study results.

Another way for patients and caregivers to be involved in the network was the A-List, an online community of people with AD and their caregivers. Surveys on the A-List asked about treatment, doctor-patient relationships, and what matters most to patients and caregivers. It also offered information about participating in research and a search tool to find nearby clinical trials.

The network recruited people from groups that have higher rates of AD and other types of dementia than whites but participate less often in clinical research. These groups included African Americans and Latinos. One recruitment tool was the play Forget Me Not, which is about an African-American family facing Alzheimer’s. The network sponsored performances of the play to increase awareness of AD and encourage African Americans to participate in clinical trials. The network also recruited clinicians, researchers, and advocacy organizations from African-American and Latino communities.

Women make up two-thirds of Alzheimer’s patients and two-thirds of caregivers. The network reached out to women and encouraged them to participate in clinical studies.

Who is in the network?

As of March 31, 2019, the AD PCPRN had registered 46,433 participants, of whom 37,031 are people age 55 and older with a diagnosis of or at risk for AD or other types of dementia. In addition, 3,077 are AD caregivers and 6,363 are study partners.

While a Partner Network in PCORnet, AD PCPRN participated in 10 studies.

How does the network support future research?

PPRNs follow PCORI standards to enhance the sustainability of the network, including fostering patient and clinician engagement at all stages of the research process, participating in multinetwork PCORnet research, and building external collaborations.

Glossary

Patient-Powered Research Networks (PPRN): PPRNs are operated and governed by patient groups and their partners and are focused on particular conditions or populations.

PCORnet: PCORnet is a network of networks that brings together patients, clinicians, researchers, and healthcare systems to share information and participate in research.

Overview

PCORI funded the development of PCORnet^®, the National Patient-Centered Clinical Research Network, to make it easier and more efficient to conduct research. PCORnet is made up of Partner Networks that harness the power of large amounts of health data and patient partnerships.

Patient-Powered Research Networks (PPRNs) are networks operated and governed by patients, families, caregivers, and community members in close collaboration with clinical researchers, with the goal of shaping and conducting research to better serve their communities and improve their health outcomes. Several PPRNs, including the National Alzheimer’s & Dementia Patient- & Caregiver-Powered Research Network (AD PCPRN), participated as Partner Networks in PCORnet.

PCORI funded AD PCPRN’s participation in PCORnet from 2015 to 2018. This report outlines AD PCPRN’s achievements toward the PPRN goals of developing and optimizing research and engagement infrastructure capacity to

• Establish a governance structure that fully engages patients and other stakeholders for the purposes of contributing to research
• Create a data infrastructure conducive to the ongoing collection of patient-reported data
• Meaningfully engage patients, caregivers, families, and community members in the research process, including identifying and recruiting participants for clinical trials and other research studies
• Lead or partner in the conduct of comparative effectiveness studies responsive to the research priorities of their communities

Network Infrastructure

AD PCPRN is a PPRN made up of people who are at risk for, have been diagnosed with, or care for someone who has Alzheimer’s disease (AD) or another type of dementia. Led by Mayo Clinic, AD PCPRN partners with UsAgainstAlzheimer’s, a nonprofit dedicated to stopping AD by 2020; University of California San Francisco (UCSF) Brain Health Registry; and University of Florida. The network had 46,433 participants as of March 2019. The network connected patients, caregivers, researchers, and patient advocates to develop, conduct, and disseminate patient-centered dementia research. The long-term goal was to accelerate clinical trial recruitment and improve the lives of people affected by dementia.

Network Governance and Operations

The AD PCPRN established a network governance council and four advisory councils to lead the network. The governance board included AD PCPRN leadership, principal investigators of research studies, and patient representatives. Advisory councils focused on the AD patient and caregiver community, communications and outreach, diversity, and registries and clinical trials.

The UCSF Brain Health Registry was the network’s primary mechanism for gathering data and recruiting patients for clinical studies. The registry is an online, public database that collects longitudinal health, cognitive, and lifestyle information from people with AD and people at risk for AD using online surveys and computerized cognitive tests.

To help people with AD and other types of dementia participate, UCSF also established a caregiver and study partner portal. People with AD and other types of dementia participating in the registry designated study partners to provide answers to survey questions about participants’ brain health, day-to-day functioning, and quality of life. Study partners registered separately and worked with participants as a team to answer surveys and complete cognitive tests online. Caregivers could also use this portal to share data about their own experiences, challenges, and quality of life.

Stakeholder Engagement

The governance council and advisory councils included patients and caregivers. They formulated research questions; defined participation requirements, comparators, and outcomes for clinical studies; contributed to decisions about network participation in proposed studies; and helped design plans for research dissemination.

Another avenue for patient and caregiver engagement was the A-List. This online community of people with AD, other types of dementia, and mild cognitive impairment and their caregivers assessed treatment-related needs and research priorities through online surveys. It also provided information about participating in research and a search tool to find local clinical trials.

The network recruited people from populations that have higher rates of AD and other types of dementia than whites but who are underrepresented in clinical research, such as African Americans and Latinos. AfricanAmericansAgainstAlzheimer’s and LatinosAgainstAlzheimer’s, advocacy organizations affiliated with AD PCPRN partner UsAgainstAlzheimer’s, led these recruitment efforts, often using creative strategies. For example, AfricanAmericansAgainstAlzheimer’s sponsored performances of Forget Me Not, a play about an African-American family facing AD, to increase awareness of AD and encourage African Americans to participate in clinical trials. The network recruited not only African-American and Latino patients and caregivers but also clinicians, researchers, and advocacy organizations from these communities. 

AD also has a disproportionate effect on women, who account for two-thirds of people with AD as well as two-thirds of caregivers. WomenAgainstAlzheimer’s, another advocacy organization affiliated with UsAgainstAlzheimer’s, supported the engagement and recruitment of female patients and caregivers.

Demographics and Research Capacity

As of March 31, 2019, the AD PCPRN had registered 46,433 participants, of whom 37,031 are people age 55 and older with a diagnosis of or at risk for AD or other types of dementia. In addition, 3,077 are AD caregivers and 6,363 are study partners.

While a Partner Network in PCORnet, AD PCPRN participated in one clinical trial, five observational studies, one secondary data analysis, two infrastructure studies, and one engagement study.

Future Opportunities

PPRNs follow PCORI standards to enhance the sustainability of the network, including fostering patient and clinician engagement at all stages of the research process, participating in multinetwork PCORnet research, and building external collaborations.