What is ADRD?
Alzheimer's disease and related dementias (ADRD) is an umbrella term for a spectrum of neurodegenerative conditions that affect memory, cognition, and behavior. These include Alzheimer's disease, frontotemporal dementia (FTD), Lewy body dementia (LBD), vascular contributions to cognitive impairment and dementia (VCID), and mixed dementias; those involving more than one underlying pathology.
An estimated 57 million people were living with dementia worldwide in 2019, a number projected to reach 153 million by 2050, according to the Global Burden of Disease Study. Conditions within the spectrum share overlapping pathologies, including amyloid plaques, tau accumulation, and neuroinflammation, but differ significantly in onset, progression, and genetic profile. The National Institute on Aging (NIA), consistent with the National Alzheimer's Project Act (NAPA), defines ADRD to include all dementia-causing conditions that share clinical similarities with, or are difficult to distinguish from, Alzheimer's disease.
What conditions are included under ADRD?
Under NIA's definition, ADRD encompasses four categories of related conditions in addition to Alzheimer's disease itself:
- Frontotemporal dementia (FTD) - A group of disorders caused by progressive nerve cell loss in the frontal or temporal lobes, often affecting personality, behavior, and language before memory.
- Lewy body dementia (LBD) - Includes both dementia with Lewy bodies and Parkinson's disease dementia, characterized by abnormal protein deposits that disrupt brain signaling.
- Vascular contributions to cognitive impairment and dementia (VCID) -Cognitive decline resulting from conditions that reduce blood flow to the brain, including stroke and small vessel disease.
- Mixed dementias - Cases in which Alzheimer's pathology coexists with one or more other dementia-causing conditions, common in older adults.
- Alzheimer's disease - Including both early-onset and late-onset forms, is the most prevalent condition within the ADRD spectrum and the primary focus of the Alzheimer's Disease Data Initiative.
Why does ADRD research require shared, harmonized data?
No single institution can generate the data volumes needed to understand a disease spectrum as heterogeneous as ADRD. Distinguishing Alzheimer's pathology from frontotemporal dementia, characterizing VCID risk across diverse populations, and building reliable biomarker models for Lewy body disease all require large, cross-institutional, longitudinal datasets curated to consistent standards.
The research infrastructure challenge has historically been structural. Data generated across clinical trials, research centers, and population biobanks exist in incompatible formats, under different governance frameworks, and with varying standards for data access and consent. Meaningful progress at scale requires infrastructure that resolves these barriers across institutions, without requiring each researcher to navigate them independently.
How does the AD Data Initiative support ADRD research?
The Alzheimer's Disease Data Initiative was established to address the data infrastructure gap at the center of ADRD research. AD Workbench, the Initiative’s secure, cloud-based research environment available to users at no cost, gives qualified researchers worldwide access to 340+ curated ADRD datasets, collaborative workspaces, and multimodal analysis tools at no cost.
Datasets available through AD Workbench span genomics, proteomics, neuroimaging, and longitudinal clinical data from leading ADRD research programs, including the Global Neurodegeneration Proteomics Consortium (GNPC), the Mayo Clinic Study of Aging (MCSA), and the National Alzheimer's Coordinating Center (NACC). More than 10,000 researchers across 129+ countries have registered to use the platform.
The Initiative is supported by the National Institute on Aging (NIA), Gates Ventures, and a consortium of public and private partners committed to accelerating ADRD research through open, equitable data access.
Frequently Asked Questions
What does ADRD stand for?
ADRD stands for Alzheimer's Disease and Related Dementias. The term is used by NIH, NIA, and the ADRD research community to refer to the full spectrum of dementia-causing neurodegenerative conditions, including Alzheimer's disease, frontotemporal dementia, Lewy body dementia, vascular dementia, and mixed dementias.
What is the difference between Alzheimer's disease and ADRD?
Alzheimer's disease is the most common form of dementia and falls within the broader ADRD category. ADRD encompasses Alzheimer's alongside several related conditions that share overlapping symptoms or pathologies. Researchers working across the spectrum often find that disease mechanisms in one condition illuminate others, which is why cross-condition data access matters for the field as a whole.
What ADRD datasets are available to researchers?
AD Workbench provides access to 340+ ADRD datasets spanning genomics, proteomics, neuroimaging, clinical assessments, and longitudinal cohort data. Contributions include data from major scientific programs and consortia such as the Alzheimer's Disease Neuroimaging Initiative (ADNI), the Global Neurodegeneration Proteomics Consortium (GNPC), and the National Alzheimer's Coordinating Center (NACC). Registration is available at no cost for qualified researchers at academic institutions and research organizations worldwide.
Who funds ADRD research globally?
ADRD research is funded by a mix of government agencies, private foundations, and pharmaceutical industry partners across the United States, Europe, and beyond. Major funders include the National Institute on Aging (NIA) and the National Institute of Neurological Disorders and Stroke (NINDS), which serve as the lead NIH institutes for ADRD research in the United States; the Alzheimer's Association, which funds investigator-initiated research worldwide through its annual grant program; Wellcome Trust, a UK-based global health foundation with significant investment in neurodegeneration research; and a growing coalition of private sector partners including pharmaceutical and biotechnology companies investing in ADRD drug development and data infrastructure. Funding priorities are shaped by national research plans, including the U.S. National Plan to Address Alzheimer's Disease and equivalent frameworks in the European Union and United Kingdom.
Who funds the AD Data Initiative?
The AD Data Initiative receives support from a consortium of public and private funders committed to accelerating ADRD research through open data access. Public sector support includes the National Institute on Aging (NIA). Private sector and philanthropic supporters include Gates Ventures, Johnson & Johnson, and the Alzheimer's Drug Discovery Foundation, among others.
How can I access ADRD research data?
Qualified researchers can register for AD Workbench at no cost at alzheimersdata.org. After registration, researchers can request access to curated datasets, use cloud-based analysis tools, and collaborate with other ADRD researchers in shared workspaces.
Footnote
https://www.thelancet.com/journals/lanpub/article/PIIS2468-2667(21)00249-8/fulltext