The National Alzheimer’s & Dementia Patient & Caregiver-Powered Research Network (AD-PCPRN) recently helped shape a National Alzheimer’s Summit in Washington, DC. AD-PCPRN is one of 20 Patient-Powered Research Networks of the National Patient Centered Clinical Research Network (PCORnet), an initiative funded by the Patient Centered Outcomes Research Institute (PCORI). AD-PCPRN is harnessing the collaboration of patients, caregivers, and researchers to create a powerful ripple effect of momentum in an effort to drive patient-centered Alzheimer’s research.
On September 27, AD-PCPRN participated in the National Alzheimer’s Summit, a three-day event organized to bring together the best Alzheimer’s and dementia researchers. Because of its importance within PCORnet, Summit leaders sought out the guidance of AD-PCPRN’s Advisory Councils, which include patients and caregivers as well as experts in the fields of communications, registries and clinical trials, to catalyze a range of initiatives that are accelerating the development of effective treatments for Alzheimer’s disease and related dementias. Each of these initiatives are priority concerns for a core partner and lead organization within AD-PCPRN: UsAgainstAlzheimer’s (UsA2), a non-profit organization pressing for greater urgency from government, industry, and the scientific community in the quest for an Alzheimer’s cure.
UsA2 hosted the National Alzheimer’s Summit in Washington, DC as well as Diversifying the Race for a Cure, a pre-Summit pilot convening on disparities in Alzheimer’s care. The AD-PCPRN Councils were key advisers at both events, and the Councils specifically helped establish each programs’ objectives and agendas. Infused with AD-PCPRN’s dedication to jumpstart and transform research, engage diverse stakeholders, and energize a bipartisan movement for medical progress, the robust agenda of presenters included patients, caregivers, researchers, industry scholars, elected officials, former First Ladies, community organizers, and advocates.
During the Summit, UsA2 released compelling reports analyzing the Alzheimer’s drug pipeline and crystalizing Alzheimer’s future impact on Latinos. In addition, UsA2 launched the first Alzheimer’s Party Convention, a platform for policymakers to advance progress for effective treatments and policy to improve the lives of those with Alzheimer’s and their caregivers. Most importantly, it created a platform for the voices of those with Alzheimer’s or other dementias and their caregivers.
Highlights of the Summit are available online. For more information about the work of AD-PCPRN, click here. If you would like information about the 2017 National Alzheimer’s Summit or Diversifying the Race to a Cure, please contact UsAgainstAlzheimer’s Chief Operating Officer Sally Sachar at firstname.lastname@example.org.
PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation’s capacity to conduct clinical research by creating a large, highly representative network that directly involves patients in the development and execution of research. More information is available at www.pcornet.org.
The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.