In recognition of the increasing urgency to find ways to prevent or treat Alzheimer’s disease and related dementias, there is a new intensified energy and focus on research efforts and support for people with dementia and their caregivers. In January 2011, the National Alzheimer’s Project Act (NAPA) became law. The legislation seeks to galvanize U.S. efforts to combat the disease and to support people with Alzheimer’s and caregivers.
Under the new law, all Federal agencies involved in Alzheimer’s work together under the leadership of the Secretary of Health and Human Services (HHS) to create and maintain a national strategy for research, care, and services. Advised by a public–private Advisory Council on Alzheimer’s Research, Care, and Services—made up of Federal and non-Federal experts and advocates—the Secretary will annually update the plan, with the goal of accelerating discoveries to improve diagnosis and the development and testing of effective treatments.
On May 15, 2012, HHS Secretary Kathleen Sebelius unveiled the first National Plan to Address Alzheimer’s Disease before more than 500 researchers and advocates attending the Alzheimer’s Disease Research Summit 2012: Path to Treatment and Prevention at NIH in Bethesda, MD. The Plan sets forth five goals for Alzheimer’s research, care, and services; the first goal is to prevent and effectively treat Alzheimer’s disease by 2025. The Secretary also outlined the Plan’s other major goals and initial steps toward meeting them.
The five goals of the National Plan to Address Alzheimer’s Disease are to:
- Prevent and effectively treat Alzheimer’s disease by 2025
- Enhance care quality and efficiency
- Expand supports for people with Alzheimer’s disease and their families
- Enhance public awareness and engagement
- Improve data to track progress
Two new NIH-funded clinical trials aimed at preventing and treating dementia were announced (see Investing in Research), as were steps toward training for physicians in assessing patients for memory loss and the launch of a new public awareness campaign. A new Federal portal website—www.alzheimers.gov—provides one-stop access to information and resources for people helping people with dementia.
The Summit, hosted by HHS and NIH with private-sector support through the Foundation for the National Institutes of Health, fulfilled a key goal of the Plan by bringing together national and international scientists to develop new ways of thinking about treatment for and prevention of dementia. Working collaboratively with industry representatives and the advocacy community, researchers looked at barriers to advancing science, strategies to improve approaches to finding treatments, and ways to develop the infrastructure needed to more quickly develop effective therapeutics.
NIA developed the Summit’s agenda to cover key areas to advance research:
- an interdisciplinary approach to discovery
- challenges in developing preclinical therapies
- whom to treat, when to treat, and what outcomes to measure
- drug repurposing and combination therapy
- nondrug interventions
- new models of public-private partnerships
Recommendations resulting from the Summit—ranging from the extensive sharing of data, disease models, and biological specimens to overcoming intellectual property barriers to speed drug development—will inform research planning for years to come.
International Database Will Foster Coordination, Collaboration
The National Plan to Address Alzheimer’s Disease identifies the coordination of research with international public and private entities as a vital strategy to accelerate the discovery of effective treatments by 2025. A significant step toward reaching that goal is now being met by the International Alzheimer’s Disease Research Portfolio (IADRP), a newly developed, publicly available database that will capture the full spectrum of current Alzheimer’s disease research investments and resources, both in the United States and internationally. A collaborative effort between NIA and the Alzheimer’s Association, the database will enable public and private funders of Alzheimer’s research to coordinate research planning, leverage resources, avoid duplication of funding efforts, and identify new opportunities in promising areas of growth.
IADRP currently is hosted and maintained by NIA. It is open to all funders of Alzheimer’s research— Federal and international funding agencies, academia, and privately funded researchers in the United States and throughout the world—interested in sharing or reviewing funding data. Researchers and funders seeking scientific opportunities can use the database to inform their own efforts by searching for research on specific topics, tracking research patterns over time, and comparing research areas supported by different funders. IADRP also offers the public a picture of the scale of ongoing research into the causes, possible treatments, and prevention of the disease.
IADRP uses the Common Alzheimer’s Disease Research Ontology (CADRO), a three-tier classification system created to capture the complete range of Alzheimer’s disease research and related resources. Developed jointly by NIA and the Alzheimer’s Association, CADRO is organized around seven categories:
- Molecular Pathogenesis and Physiology of Alzheimer’s Disease
- Diagnosis, Assessment, and Disease Monitoring
- Translational Research and Clinical Interventions
- Care, Support, and Health Economics of Alzheimer’s Disease
- Research Resources
- Consortia and Public-Private Partnerships
Along with NIA, more than 20 NIH Institutes and Centers are part of the database. Other participating Federal agencies include the Agency for Healthcare Research and Quality, Centers for Disease Control and Prevention, Administration for Community Living, Department of Veterans Affairs, and Department of Defense. Alzheimer’s Research UK is the first international entity to join the collaboration.
The database provides online tools to search Alzheimer’s disease research funding across funding organizations. For example, a motion chart provides a time-lapsed view of Federal and non-Federal funding of Alzheimer’s disease research projects using the CADRO categories and topics. Search results can be downloaded into an Excel spreadsheet to allow for further visualization and analysis by funding organization, category, topics and themes, and geography. The three graphics below were created using IADRP visualization tools.
This chart shows the distribution of Alzheimer’s disease research projects conducted by NIH Institutes, Offices, and Centers in 2011.
This chart shows the percentage of NIH-funded Alzheimer’s disease research projects across CADRO research categories in 2011.
This chart displays the percentage of NIH research projects by CADRO topic funded in 2011.