The Dementia DataHub (R01 AG075730), created by NORC at the University of Chicago, provides interactive dashboards and maps to view dementia diagnoses among Medicare beneficiaries, with results available at the national, state, and county levels. NORC Dementia DataHub uses the term “dementia” to refer broadly to Alzheimer’s disease dementia and Alzheimer’s disease related dementias (AD/ADRD) and other diagnoses that are sometimes used to indicate these conditions.
The National Institute on Aging developed OutreachPro to help researchers create customized outreach materials for clinical trials on Alzheimer’s and related dementias. Choose from a suite of audience-specific images, headlines and text, available in multiple languages and tested for maximum recruiting impact. Then add your own content, apply your own logo, and brand colors. Watch the video to the right for an overview of how to use OutreachPro.
ADORE is the NIA repository of resources to support the recruitment and retention of participants into clinical trials and studies on Alzheimer’s disease and related dementias.
PCORI is a leader in driving US clinical research to becomes more patient-centered. They are committed to ensuring that patients and other healthcare stakeholders are involved throughout the research process, offering awards to promote engagement in research, dissemination and implementation projects, methodology research, and the development of research infrastructure.
The Center for Aging and Serious Illness (CASI) at Massachusetts General Hospital aims to improve the well-being of older adults and enhance the lived experience of those with advanced illnesses. By creating a pipeline of strong investigators, conducting applied clinical studies, and supporting a robust research community, CASI aims to engage aging populations in research, illuminate how to provide effective care for serious illnesses, and augment well-being for older adults and their care partners.
The Clin-STAR (Clinician–Scientists Transdisciplinary Aging Research Coordinating Center) Initiative aims to connect and support the development of clinician-scientists across a variety of disciplines in order to expand aging research that focuses on improving the health, independence, and well-being of older adults. To facilitate these goals, Clin-STAR provides funding, mentorship, and resources for clinician-scientists at all careers levels across a variety of disciplines. They also host the Clin-STAR database, a discovery tool that enables research collaboration and networking among members.
Best Practice Caregiving is a free online database of proven dementia programs for family caregivers. It offers a searchable, interactive, national database of vetted, effective programs that offer much-needed information and support. The database is an invaluable tool for healthcare and community-based organizations, as well as funders and policy makers to discover and share high quality programs for caregivers.
LiveWell Dementia Specialists (formerly the Alzheimer’s Resource Center) is a nonprofit of care providers, researchers, and pioneers in dementia care. The organization is dedicated to providing support and education to people living with dementia, their caregivers, and care and research professionals through various resources, courses, training, and events.
A stakeholder engagement navigator guide for health researchers focusing on Dissemination, Implementation, Communication, and Engagement (DICE)
The NIH Pragmatic Trials Collaboratory aims to improve the way clinical trials are conducted by creating a new infrastructure for collaborative research with healthcare systems, ultimately ensuring that healthcare providers and patients can make decisions based on the best available clinical evidence. The Collaboratory supports the design and rapid execution of pragmatic clinical trial Demonstration Projects to address questions of major public health importance and engage healthcare delivery systems in research partnerships. The Collaboratory also provides training resources on how to design, conduct, and disseminate embedded pragmatic clinical trials (ePCTs).
