Listed below are links to websites and blogs that discuss Alzheimer's disease and related dementias that NAPA has been alerted to by participating affiliates and Council members. Descriptions from the website and direct links are provided.
Table of Contents
PLEASE NOTE: Information included here is not an endorsement of the views or information by National Alzheimer's Project Act, its Advisory Council members, the Administration or the federal agencies involved in NAPA.
Comments and questions, or alerts to broken links, should be sent to napa@hhs.gov.
Federal Government Websites
Accelerating Medicines Partnership (AMP): http://www.nih.gov/science/amp/index.htm
The Accelerating Medicines Partnership (AMP) is a public-private partnership between the National Institutes of Health (NIH), the U.S. Food and Drug Administration (FDA), 10 biopharmaceutical companies and multiple non-profit organizations to transform the current model for developing new diagnostics and treatments by jointly identifying and validating promising biological targets for therapeutics. The ultimate goal is to increase the number of new diagnostics and therapies for patients and reduce the time and cost of developing them.
Alzheimer's Disease Cooperative Study (ADCS): http://adcs.org/
The Alzheimer's Disease Cooperative Study (ADCS) was formed in 1991 as a cooperative agreement between the National Institute on Aging (NIA) and the University of California, San Diego. The ADCS is a major initiative for Alzheimer's disease (AD) clinical studies in the Federal government, addressing treatments for both cognitive and behavioral symptoms. This is part of the NIA Division of Neuroscience's effort to facilitate the discovery, development and testing of new drugs for the treatment of AD and also is part of the Alzheimer's Disease Prevention Initiative.
Alzheimer's Disease Supportive Services Program (ADSSP): http://www.aoa.acl.gov/AoA_Programs/HPW/Alz_Grants/index.aspx
The Alzheimer's Disease Supportive Services Program (ADSSP) supports state efforts to expand the availability of community-level supportive services for persons with Alzheimer's Disease and Related Disorders (ADRD) and their caregivers. Formerly known as the Alzheimer's Disease Demonstration Grants to the States (ADDGS), the ADSSP was created by Section 398 of the Public Health Services Act. Under Administration on Aging's leadership and in collaboration with the Aging Network, the ADSSP National Resource Center, and a variety of state and community partners, the ADSSP supports the creation of responsive, integrated, and sustainable service delivery systems for individuals with ADRD and their family caregivers across the United States.
AoA Eldercare Locator Website: http://www.eldercare.gov
A public service of the U.S. Administration on Aging connecting you to services for older adults and their families.
AoA Long-Term Care Website: http://www.longtermcare.gov
The government's free information resource about long-term care. Here you can find links to information from agencies and organizations with expertise in these areas.
Brain Health As You Age: You Can Make A Difference: http://www.acl.gov/Get_Help/BrainHealth/Index.aspx
This webpage offers evidence-based resources that can help professionals, older adults, and people with disabilities promote brain health. You can use the resources to educate yourself and others.
HHS Alzheimer Website: http://www.alzheimers.gov/
The government's free information resource about Alzheimer's disease and related dementias. Here you can find links to authoritative, up-to-date information from agencies and organizations with expertise in these areas.
International Alzheimer's Disease Research Portfolio (IADRP): http://iadrp.nia.nih.gov/cadro-web
The International Alzheimer's Disease Research Portfolio (IADRP) database brings together funded research supported by public and private organizations both in the US and abroad all categorized using the Common Alzheimer's Disease Research Ontology or CADRO. Launched in 2010 as a joint collaboration between the National Institute on Aging (NIH) and the Alzheimer's Association, IADRP enables users the ability to assess the portfolios of major organizations (currently 30+) for areas of overlap as well as areas of opportunities in which to collaborate and coordinate in a collective effort to advance AD research.
National Alzheimer's and Dementia Resource Center (NADRC): https://nadrc.acl.gov/
The Administration on Aging/ Administration for Community Living (AoA/ACL) funds the National Alzheimer’s and Dementia Resource Center (NADRC). The goals of the NADRC include, but are not limited to, the provision of expert technical assistance to AoA/ACL and its grantees, as well as making program information and resources available to individuals and organizations outside the Alzheimer’s grantee community.
NIA Alzheimer's Disease Education and Referral (ADEAR) Center: http://www.nia.nih.gov/alzheimers
The U.S. Congress created the Alzheimer's Disease Education and Referral (ADEAR) Center in 1990 to "compile, archive, and disseminate information concerning Alzheimer's disease" for health professionals, people with AD and their families, and the public. The ADEAR Center is a service of the National Institute on Aging (NIA), one of the Federal Government's National Institutes of Health and part of the U.S. Department of Health and Human Services. The NIA conducts and supports research about health issues for older people, and is the primary Federal agency for Alzheimer's disease research.
NIA National Institute on Aging Genetics of Alzheimer's Disease Data Storage Site (NIAGADS): https://www.niagads.org/
NIA has established the National Institute on Aging Genetics of Alzheimer's Disease Data Storage Site (NIAGADS) as a national genetics data repository in order to facilitate access by qualified investigators to genotypic data for the study of the genetics of late-onset Alzheimer's disease. It is the policy of the NIA that all Genetic Data derived from NIA funded studies for the genetics of late-onset Alzheimer's disease be deposited at NIAGADS or another NIA approved site or both whenever possible. Such Genetic Data shall be made available as soon as possible, but no later than upon acceptance of a subset of data for publication or public disclosure of a submitted patent application, whichever is earlier. For example, after publication of preliminary reports of the work, a subset of phenotypic data and Genetic Data is to be shared with other investigators for secondary analysis. Generally, this will be a subset of data, or data that are made public and will not typically include the full range of Associated Phenotypic Data being collected in genetic studies. NIAGADS along with other NIA approved sites will make these Genetic Data and Associated Phenotypic Data available to qualified investigators in the scientific community for secondary analysis in accordance with standards established by the NIA.
Older Americans Act Title VI: http://Olderindians.aoa.gov
This website is dedicated to providing a forum for increased communication between Title VI programs. Particularly, this website will facilitate communication and information dissemination pertaining to training and technical assistance for Title VI Directors. This website intends to provide relevant and useful information so that Title VI Directors can improve their programs to better meet the needs of older Indians.
Non-Federal Government Websites
Active Aging Research Center (AARC): http://aarc.chess.wisc.edu/
The Active Aging Research Center (AARC) exists to figure out ways that technology can help older people live independently and stay in their homes.
Alzheimer's Disease Sequencing Project (ADSP): https://www.niagads.org/adsp/content/home
The overarching goals of the ADSP are to: (1) Identify new genomic variants contributing to increased risk of developing Late-Onset Alzheimer's Disease (LOAD). (2) Identify new genomic variants contributing to protection against developing Alzheimer's Disease (AD). (3) Provide insight as to why individuals with known risk factor variants escape from developing AD. (4) Examine these factors in multi-ethnic populations as applicable in order to identify new pathways for disease prevention.
Global CEO Initiative on Alzheimer's Disease (CEOi): http://www.ceoalzheimersinitiative.org/
The CEO Initiative represents an acceptance of the invitation from public authorities, domestically and internationally, to the private sector to forge robust public- private partnerships to stop Alzheimer's disease and dementia. Our vision is that the CEO Initiative becomes the leading business voice on this seminal public health issue of our time, which will have profound impact in fiscal, social and political matters as we "change the game" on Alzheimer's.
Integrated Care Resource Center (ICRC): http://www.integratedcareresourcecenter.com/
The Integrated Care Resource Center (ICRC) was established to help states develop integrated programs that coordinate the full range of medical, behavioral health, and long-term services and supports for individuals who are dually eligible for Medicare and Medicaid.
National Long-Term Care Ombudsman Resource Center (NORC): http://ltcombudsman.org/
The National Long-Term Care Ombudsman Resource Center provides support, technical assistance and training to the 53 State Long-Term Care Ombudsman Programs and their statewide networks of almost 600 regional (local) programs. The Center's objectives are to enhance the skills, knowledge, and management capacity of the State programs to enable them to handle residents' complaints and represent resident interests (individual and systemic advocacy). Funded by the Administration on Aging(AoA), the Center is operated by Consumer Voice, The National Consumer Voice for Quailty Long-Term Care, in cooperation with the National Association of States United for Aging and Disabilities (NASUAD).
Portal of Geriatric Online Education (POGOe): http://www.pogoe.org/
The Portal of Geriatrics Online Education (POGOe) is free collection of expert-contributed geriatrics educational materials for educators and learners. Our materials are available digitally and use various teaching methods.
Blogs
Moving Dementia Caregiver Support Services into the Mainstream: http://blog.aarp.org/2017/10/02/moving-dementia-caregiver-support-services-into-the-mainstream/
Blog available by AARP Public Policy Institute.
Summit to Focus on Dementia Care and Caregivers: https://www.nia.nih.gov/research/blog/2017/09/summit-focus-dementia-care-and-caregivers
The blog discusses the upcoming Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers.