UsAgainstAlzheimer’s and PCORI Team to Host Capitol Hill Briefing on Patient/Caregiver Engagement

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WASHINGTON, DC, June 21, 2016—Today, UsAgainstAlzheimer’s and the Patient-Centered Outcomes Research Institute (PCORI) will co-host a briefing, “A New Era in Alzheimer’s Research,” aimed at discussing how patient-centered care can speed medical innovation, improve quality of care and help support caregivers.

The briefing, to be held on the Hill at the Dirksen Senate Office Building from 2:30-3:30pm, comes on the heels of promising congressional developments earlier this month that saw the Senate Appropriations Committee approve a bill that would increase Alzheimer’s funding by $400 million. Shifting the attention towards research that can address the needs of patients and caregivers, the briefing will focus on awareness building, highlight valuable PCORI research that will empower patients and caregivers, and will be a platform to discuss gaps in research.   

“Too often, the community of those with or at risk of Alzheimer’s and their caregivers are not consulted by those developing or approving treatments for the disease. Patients’ and caregivers’ preferred approaches to improving their quality of life, to enhancing their care or to the risks we are willing to take to gain the benefits of innovative medicines are not sought,” said UsAgainstAlzheimer’s co-founder and Chairman, George Vradenburg. “We are pleased to work with PCORI and other partners to accelerate innovative treatments and to engage our patient and caregiver community as valued participants in these critical clinical research efforts.”

UsAgainstAlzheimer’s and its networks, along with the Mayo Clinic and the University of California-San Francisco Brain Health Registry, have partnered with PCORI on the development of the National Alzheimer’s and Dementia Patient & Caregiver-Powered Research Network (AD-PCPRN). The network’s goal is to connect patients, caregivers and researchers focused on developing, conducting and disseminating patient-centered dementia research. The network will give increased attention to African Americans and Latinos, who are more likely to be affected by Alzheimer’s, but are less likely to participate in clinical research.

“Our cry, ‘nothing about us without us,’ comes from a sense of being viewed as an object of study, not the purpose of all studies. This must change. That's why advocacy organizations are rallying behind PCORI’s mission, which further validates the voice of the patient, and under our AD-PCPRN, where the caregiver is offered the same respect and consideration,” said Meryl Comer, president of the Geoffrey Beene Foundation Alzheimer's Initiative, who serves as the co-principal investigator of the AD-PCPRN.

Both Comer and Vradenburg will be speakers during the briefing. Other speakers include the following:

  • Gail Hunt, Board Member, Patient-Centered Outcomes Research Institute, President and CEO, National Alliance for Caregiving
  • Natalia Loskutova, MD, PhD, Director of Evaluation, American Academy of Family Physicians
  • Eleanor M. Perfetto, PhD, MS, Senior Vice President, Strategic Initiatives, National Health Council
  • Ronald C. Petersen, MD, PhD, Director, Mayo Alzheimer’s Disease Research Center, Professor of Neurology, Mayo Clinic College of Medicine, and Principal Investigator, National Alzheimer’s & Dementia Patient & Caregiver-Powered Research Network
  • Jean Slutsky, PA, MSPH, Chief Engagement and Dissemination Officer; Program Director, Communication and Dissemination Research, Patient-Centered Outcomes Research Institute

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UsAgainstAlzheimer’s (UsA2) is an innovative non-profit organization demanding – and delivering – a solution to Alzheimer’s. 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, collaborative advocacy, and strategic investments.

Founded in 2010, UsAgainstAlzheimer’s has worked across sectors to: (1) secure the national goal of preventing and effectively treating Alzheimer’s by 2025 and help secure nearly $500 million in additional public funding for Alzheimer’s research over the past few years; (2) drive global efforts that resulted in the leaders of the world’s most powerful nations, the G7 group, to embrace a similar 2025 goal and to call for greater levels of research investment and collaboration; and (3) forge industry commitments to improve efficiencies for an expedited drug discovery and approval process.

Contact: Tim Tassa
Phone: 202-263-2580
Email: [email protected]