NIAGADS is a designated national data repository for human genetics research that collaborates with researchers all over the world to facilitate data access and sharing for genomic and associated omics data related to Alzheimer’s Disease (AD) and Alzheimer’s Disease and Related Dementias (ADRD) as well as healthy aging. NIAGADS offers >130 datasets, encompassing >238,000 samples, across >180,000 subjects, 24 data types and 87 cohorts. NIAGADS also serves as the data coordinating center for the Alzheimer’s Disease Sequencing Project (ADSP), supporting data production and analysis for this ongoing project that currently offers around 20,000 whole exomes and 58,000 whole genomes. In addition to qualified access data stored at NIAGADS, when possible NIAGADS makes AD/ADRD data accessible outside of the data access request process (in alignments with submitting institutional IRB guidance on appropriate sharing), through the NIAGADS Open Access platform, a suite of knowledgebases, data exploration modalities, and datasets available to the public. Supported by a talented and dedicated team of developers, data analysts, researchers, and project managers, NIAGADS is committed to helping their user base to identify datasets, access stored data, and share resulting data with the research community to advance the understanding of ADRD.

The National Centralized Repository for Alzheimer's Disease and Related Dementias (NCRAD) is the National Institute on Aging (NIA) designated biorepository for dementia research. NCRAD provides study coordination, sample banking and sample distribution services to support AD and ADRD research. Currently, NCRAD banks samples from over 90 studies, including many large consortia such as the Alzheimer Disease Research Centers (ADRCs), CLARiTI, ADNI, ALLFTD, NAPS, ABC-DS, ACAD, BEYONDD, LEADS, DIAN, and many more. There are specimens from over 135,000 research participants banked at NCRAD. NCRAD banks a wide range of biospecimens including DNA, RNA, plasma, serum, peripheral blood mononuclear cells, cerebrospinal fluid, stool, brain tissue, induced pluripotent stem cells and fibroblasts that are collected and processed using neurodegeneration focused best practice protocols. Paired with its mission to bank samples is NCRAD’s focus on distributing samples to support research focused on the etiology, early detection and therapeutic development for AD and ADRD. Efforts are focused on ensuring maximum utility of samples and data by the wider research community. To accomplish this, NCRAD has information on its website about each of the studies banking with samples that have samples available for request. NCRAD also hosts query-based catalogs that can be used to review available samples and select those to be included in a sample request. To date, NCRAD has distributed nearly half a million sample aliquots to approved researchers.

The Alzheimer's Disease Neuroimaging Initiative (ADNI) is a large, multi-center, longitudinal study that aims to understand the progression of Alzheimer's disease and validate biomarkers for Alzheimer’s disease trials by collecting data from a diverse group of participants over time. It utilizes a variety of methods, including magnetic resonance imaging (MRI), positron emission tomography (PET), cerebrospinal fluid (CSF) analysis, blood biomarkers, and genetic testing, to track changes in the brain and body of individuals with Alzheimer's, those with mild cognitive impairment (MCI), and those with normal cognitive function.

The AD Knowledge Portal is a public data repository that stores and shares multi-omic data (including whole genome sequencing, transcriptomics, proteomics, metabolomics, and others), analyses, and tools generated by multiple collaborative research programs focused on aging, dementia, and Alzheimer’s disease (AD), funded by the National Institute on Aging (NIA). These programs embrace open science principles and require data to be released in a rapid manner, according to the NIH Genomic Data Sharing Policy. All data, methods, and results generated are distributed under F.A.I.R. (Findable, Accessible, Interoperable, and Reusable; Wilkinson et al., 2016) principles. The AD Knowledge Portal includes: 149 Studies from 97 Institutions 20 Data types (including WGS, sc/snRNAseq, bulk RNAseq, and more)

CARD is a collaborative initiative of the National Institute on Aging (NIA) and National Institute of Neurological Disorders and Stroke (NINDS) that supports basic, translational, and clinical research on Alzheimer’s disease and related dementias. CARD’s central mission is to initiate, stimulate, accelerate, and support research that will lead to the development of improved treatments and preventions for these diseases. CARD wants to serve as an honest broker / hub for federated FAIR in Alzheimer’s disease.

The National Alzheimer’s Coordinating Center (NACC) functions as the centralized data repository and collaboration and communication hub for the National Institute of Aging’s (NIA’s) Alzheimer’s Disease Research Centers (ADRC) Program, which currently includes 36 centers across the United States. NACC is home to one of the largest, oldest, and most powerful Alzheimer’s datasets, built in collaboration with ADRCs over the past 20+ years. The NACC Dataset includes: 54,631+ participants (20,321 active), 204,031+ clinical assessments (1-20 per participant with a median of 3), and 8,471+ neuropathology exams (from 58% of deceased participants)