Results Summary

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.

Title National Alzheimer’s & Dementia Patient- & Caregiver-Powered Research Network (AD PCPRN)
Network design Patient-Powered Research Network (PPRN)
Lead partner Mayo Clinic
Other partners UsAgainstAlzheimer’s
University of California San Francisco Brain Health Registry
University of Florida
Participants 46,433
Area(s) of focus Alzheimer’s disease and other types of dementia

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.

Population (Older Adults, as of 03/31/19)

Race/ethnicity

  • 87% white
  • 4% black
  • 3% mixed race
  • 2% Asian
  • 2% other
  • 1% no information
  • 3% Hispanic

Sex

  • 72% female
  • 28% male

Age

  • 49% 45–64 years
  • 51% 65 or older

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.

Engagement Resources

Project Information

Ronald Petersen, MD, PhD^
Mayo Clinic
$1,600,807 *
The National Alzheimer's & Dementia Patient & Caregiver-Powered Research Network

Key Dates

March 2019
2015
2018

Study Registration Information

^Glenn E. Smith, PhD, was the original principal investigator for this project.

Journal Articles

Tags

Has Results
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: January 27, 2023