Paradigm Shift in Alzheimer’s Research Empowers Caregivers and Patients with a Tech-Driven Role  

Washington, DC – UsAgainstAlzheimer’s, a bold and entrepreneurial organization demanding greater urgency in the fight against Alzheimer's, announced today that it has been approved – along with its partners, Mayo Clinic, University of California, San Francisco, and the University of Florida – for a 3-year contract of up to $1.56 million by the Patient-Centered Outcomes Research Institute (PCORI). This award will contribute to the creation of a patient and caregiver research network to empower those closest to Alzheimer’s and related dementias to accelerate a cure. The funding award has been approved by PCORI’s Board pending completion of a business and programmatic review by PCORI staff and negotiation of a formal award contract.

The new network – the National Alzheimer’s & Dementia Patient & Caregiver-Powered Research Network (AD PCPRN) – will be made up of representatives of those who have, are at risk for having, or care for someone who has Alzheimer’s disease or dementia. The national network will connect patients, caregivers, and researchers focused on developing, conducting, and disseminating patient-centered dementia research using state-of-the-art approaches, particularly mobile and online tools.

“With 15 million Americans expected to suffer from Alzheimer’s and related dementias by 2015, it is essential that effective treatments be developed as soon as possible,” said George Vradenburg, co-founder and chair of UsAgainstAlzheimer’s. “By including those at risk for and with Alzheimer’s and their caregivers into this family-centered network, we can bring the voices of those most affected by this disease to brain health solutions, including the testing of innovative treatments.”

The Network hopes to enroll large numbers of individuals through innovative web-and-mobile based tools that will greatly expand, patients’ and caregivers’ understanding of brain health and researchers’ understanding of the impact of the disease and treatments on quality of life. Importantly, it will also screen and help individuals into appropriate clinical trials and studies.

Because African American and Latino groups have a higher prevalence of Alzheimer’s and related dementias than whites and are also underrepresented in clinical research, particular attention will be given to involvement and recruitment of patients and caregivers in those communities. The project will also support the conduct of research concerning the impact of dementia on caregivers, and pursue studies of interventions that reduce the adverse effects on caregiver health. These goals will be achieved through collaborations with patients, patient advocacy groups, Alzheimer’s research teams, and industry partners developing diagnostics and treatments for dementia.

“Caregivers are the primary ‘second-hand victim’ of what is a truly family disease that jeopardizes everyone’s health and well-being,” said Meryl Comer, co-Principal Investigator for the project. “This PCORI award elevates the caregiver status and respects that most of us traded in professional careers to care for loved ones. Armed with the latest mobile applications, we can be empowered as active partners in research – both as surrogates for patient-reported outcomes and by tracking our own health status across disease progression. It’s critical that what happens to us be factored into the data.”

“We are excited to be part of this collaborative effort that brings together researcher, patients, caregivers and advocacy groups,” said Ronald Petersen, M.D., Ph.D., Director of the Mayo Clinic Alzheimer's Disease Research Center and the Mayo Clinic Study of Aging. 

The Network will be led by UsAgainstAlzheimer’s, the Mayo Clinic, and the University of California-San Francisco’s (UCSF) Brain Health Registry (BHR). The network will benefit from the previous PCORI funding of the ‘Comparative Effectiveness of Behavioral Inventions to Prevent or Delay Dementia’ project led by Dr. Glenn Smith, a co-PI of the present project, and Chair of the Department of Clinical and Health Psychology at the University of Florida. UsAgainstAlzheimer’s will harness the power of its family of networks – including AfricanAmericansAgainstAlzheimer’s, ClergyAgainstAlzheimer’s, LatinosAgainstAlzheimer’s, WomenAgainstAlzheimers, Faith United Against Alzheimer's and others – to form the patient and caregiver recruitment engine for the project, particularly in minority communities.

In order 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 partners including Leaders Engaged on Alzheimer’s Disease (LEAD), the Alzheimer’s Disease Cooperative Studies, the Global Alzheimer’s Platform (GAP).

Principal Investigators for this PCORI project are Ronald Petersen, M.D., Ph.D., Director of the Mayo Clinic Alzheimer's Disease Research Center and the Mayo Clinic Study of Aging; Dr. Glenn Smith, Professor and Chair, Department of Clinical and Health Psychology, University of Florida; and Meryl Comer, president of the Geoffrey Beene Foundation Alzheimer’s Initiative, founding board member of UsAgainstAlzheimer’s, co-founder of its WomenAgainstAlzheimer’s Network, and a veteran 20 year caregiver. Ms. Comer will also lead the Network’s Governing Board.

Other key personnel include Michael Weiner, MD, the Principal Investigator the Alzheimer’s Disease Neuroimaging Initiative (ADNI) and Professor of Radiology and Biomedical Engineering, Medicine, Psychiatry and Neurology at UCSF; Marietta Anthony, PhD, former director of research programs in the National Institutes of Health Office of Research on Women’s Health, Deputy Director of the FDA Office of Women’s Health, and Critical Path Initiative; and UsAgainstAlzheimer’s network directors Virginia Biggar, Megan Jackson, Brooks Kenney, Stephanie Monroe, and Jason Resendez.

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UsAgainstAlzheimer’s is an innovative, relentless advocacy organization demanding a transformative solution to Alzheimer's by 2020.  Driven by the suffering of millions of families, USAgainstAlzheimer’s presses for greater urgency from government, industry and the scientific community in the quest for an Alzheimer's cure – accomplishing this through effective leadership, collaboration, advocacy, and strategic investments.  We are committed to ending Alzheimer’s by: accelerating the means of prevention and treatments; increasing the resources committed to stopping Alzheimer’s; and delivering dramatic improvements in the systems to support those living with Alzheimer's and their care partners, while continuing our fight for a cure.

PCORI is an independent, non-profit organization authorized by Congress in 2010 to fund research that will provide patients, their caregivers and clinicians with the evidence-based information they need to make better-informed healthcare decisions. PCORI is committed to continuously seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.