{"doi":"10.1002/alz.70255","title":"NIAGADS: A data repository for Alzheimer's disease and related dementia genomics","abstract":"The National Institute on Aging Genetics of Alzheimer's Disease Data Storage Site (NIAGADS) is the National Institute on Aging-designated national data repository for human genetics research on Alzheimer's disease and related dementias (ADRD). NIAGADS maintains a high-quality data collection for ADRD genetic/genomic research and supports genetics data production and analysis, including whole genome and exome sequence data from the Alzheimer's Disease Sequencing Project and other genotype/phenotype data, encompassing 211,000 samples. NIAGADS shares these data with hundreds of research groups around the world via the Data Sharing Service, a Federal Information Security Modernization Act moderate compliant cloud-based platform that fully supports the National Institutes of Health Genomic Data Sharing Policy. NIAGADS Open Access consists of multiple knowledge bases with genome-wide association summary statistics and rich annotations on the biological significance of genetic variants and genes across the human genome. As a one-stop access portal for Alzheimer's disease (AD) genetics, NIAGADS stands as a keystone in promoting collaborations to advance the understanding and treatment of AD. HIGHLIGHTS: The National Institute on Aging Genetics of Alzheimer's Disease Data Storage Site (NIAGADS) is a data repository for the storage of genetics and genomics data. NIAGADS houses data for Alzheimer's disease, related dementias, and healthy aging. NIAGADS offers open and qualified access data and knowledgebases to explore open access data. The Alzheimer's Disease Sequencing Project dataset is the largest Alzheimer's disease and related dementias joint called whole genome sequencing dataset (≈ 58,000 whole genomes).","journal":"Alzheimer s & Dementia","year":2025,"id":521475,"datarank":0.30591015328283866,"base_score":1.791759469228055,"endowment":1.791759469228055,"self_citation_contribution":0.26876392038420827,"citation_network_contribution":0.03714623289863041,"self_endowment_contribution":0.26876392038420827,"citer_contribution":0.03714623289863041,"corpus_percentile":45.62543513576236,"corpus_rank":7030,"citation_count":5,"citer_count":3,"citers_with_citation_signal":1,"citers_with_endowment":1,"datacite_reuse_total":0,"is_dataset":true,"is_dataset_confidence":0.962,"is_data_producer":false,"deposit_databanks":null,"is_oa":true,"file_count":0,"downloads":0,"has_version_chain":false,"published_date":"2025-01-01","fair_score":6.25,"fair_percentile":25.068786303882604,"algorithm_id":"datarank_citation_only_1hop_v6","ranking_scope":"data_only","authors":[{"id":60359,"name":"Otto Valladares","orcid":"0000-0001-8055-2187","position":1,"is_corresponding":false},{"id":383487,"name":"Emily Greenfest‐Allen","orcid":"0000-0002-7294-8461","position":2,"is_corresponding":false},{"id":936442,"name":"Heather Nicaretta","orcid":null,"position":3,"is_corresponding":false},{"id":1328005,"name":"Maureen Kirsch","orcid":null,"position":4,"is_corresponding":false},{"id":1328006,"name":"Youli Ren","orcid":null,"position":5,"is_corresponding":false},{"id":569219,"name":"Živadin Katanić","orcid":null,"position":6,"is_corresponding":false},{"id":1391810,"name":"Heather White","orcid":"0009-0004-4645-6545","position":7,"is_corresponding":false},{"id":1327555,"name":"Andrew Wilk","orcid":"0000-0002-5469-9799","position":8,"is_corresponding":false},{"id":1328008,"name":"Lauren Bass","orcid":null,"position":9,"is_corresponding":false},{"id":472452,"name":"Jascha Brettschneider","orcid":null,"position":10,"is_corresponding":false},{"id":1191550,"name":"Luke Carter","orcid":null,"position":11,"is_corresponding":false},{"id":568261,"name":"Jeffrey Cifello","orcid":"0009-0000-6147-2026","position":12,"is_corresponding":false},{"id":1327556,"name":"Wei‐Hsuan Chuang","orcid":"0000-0002-3749-4425","position":13,"is_corresponding":false},{"id":1112805,"name":"Kaylyn Clark","orcid":"0000-0002-7207-6608","position":14,"is_corresponding":false},{"id":569218,"name":"Prabhakaran Gangadharan","orcid":null,"position":15,"is_corresponding":false},{"id":1162719,"name":"Jacob Haut","orcid":null,"position":16,"is_corresponding":false},{"id":909681,"name":"Pei‐Chuan Ho","orcid":null,"position":17,"is_corresponding":false},{"id":1328009,"name":"Wen-Hwai Horng","orcid":null,"position":18,"is_corresponding":false},{"id":1162720,"name":"Taha Iqbal","orcid":null,"position":19,"is_corresponding":false},{"id":987482,"name":"Yumi Jin","orcid":"0000-0003-2499-8760","position":20,"is_corresponding":false},{"id":1328010,"name":"Peter Keskinen","orcid":null,"position":21,"is_corresponding":false},{"id":1328011,"name":"Alexis Lerro Rose","orcid":null,"position":22,"is_corresponding":false},{"id":1328012,"name":"Michelle K Moon","orcid":null,"position":23,"is_corresponding":false},{"id":1328013,"name":"Joseph Manuel","orcid":null,"position":24,"is_corresponding":false},{"id":613826,"name":"Liming Qu","orcid":"0000-0002-9240-8411","position":25,"is_corresponding":false},{"id":1328014,"name":"Flawless Robbins","orcid":null,"position":26,"is_corresponding":false},{"id":1328015,"name":"Naveensri Saravanan","orcid":null,"position":27,"is_corresponding":false},{"id":538009,"name":"Sha Jin","orcid":"0000-0001-8256-0682","position":28,"is_corresponding":false},{"id":1328016,"name":"Sam Tate","orcid":null,"position":29,"is_corresponding":false},{"id":1391811,"name":"Yi Zhao","orcid":"0000-0002-3839-6499","position":30,"is_corresponding":false},{"id":704155,"name":"Alzheimer's Disease Sequencing Project","orcid":null,"position":31,"is_corresponding":false},{"id":1218730,"name":"Laura Cantwell","orcid":null,"position":32,"is_corresponding":false},{"id":1328018,"name":"J. A. Gardner","orcid":null,"position":33,"is_corresponding":false},{"id":1004397,"name":"Shin‐Yi Chou","orcid":"0000-0003-3871-3527","position":34,"is_corresponding":false},{"id":524049,"name":"Jung‐Ying Tzeng","orcid":"0000-0002-5505-1775","position":35,"is_corresponding":false},{"id":261839,"name":"William S. Bush","orcid":"0000-0002-9729-6519","position":36,"is_corresponding":false},{"id":54608,"name":"Adam C. Naj","orcid":"0000-0002-9621-2942","position":37,"is_corresponding":false},{"id":568259,"name":"Pavel P. Kuksa","orcid":"0000-0003-2248-6403","position":38,"is_corresponding":false},{"id":568260,"name":"Wan‐Ping Lee","orcid":"0000-0002-5305-1181","position":39,"is_corresponding":false},{"id":568264,"name":"Yuk Yee Leung","orcid":"0000-0002-3047-5440","position":40,"is_corresponding":false},{"id":27607,"name":"Gerard D. Schellenberg","orcid":"0000-0003-1115-2475","position":41,"is_corresponding":false},{"id":261852,"name":"Li‐San Wang","orcid":"0000-0002-3684-0031","position":42,"is_corresponding":false},{"id":1162722,"name":"Amanda Kuzma","orcid":null,"position":0,"is_corresponding":true}],"reference_count":39,"raw_metadata":null,"created_at":"2026-07-19T02:49:44.558743Z","pmid":"40545618","pmcid":"PMC12183107","fwci":null,"citation_percentile":null,"influential_citations":0,"oa_status":null,"license":null,"views":0,"total_file_size_bytes":0,"version_count":0,"fair_f":11.1111,"fair_a":37.5,"fair_i":0.0,"fair_r":12.5,"fair_zscore":-1.1162,"fair_rationale":{"fair_score":6.25,"has_llm":true,"taxonomy_version":"fair_taxonomy_v5","dimensions":{"F":{"name":"Findable","score":11.11,"criteria":[{"key":"f_dataset_pid","label":"Persistent identifier for the data","kind":"llm","weight":2.0,"fraction":0.0,"verdict":"no","evidence":null,"grounded":false,"rationale":"The paper mentions that NIAGADS assigns DOIs to datasets, but it does not provide a specific persistent identifier for this study's own data. 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[downgraded to 'partial' — no verifiable quote from the paper] [majority verdict 'partial' (3/5 passes agreed)]","gain":2.08,"priority":"useful","scored":true},{"key":"f_data_availability_statement","dimension":"F","label":"Data-availability statement","action":"Replace the statement with the repository template: name the repository and give the accession or DOI (Colavizza category 3). This is the only DAS class associated with a measured citation advantage; 'available on reasonable request' and 'within the article' are not.","anchors":["yes","partial","no"],"verdict":"partial","current":0.5,"evidence":"DATA AVAILABILITY STATEMENT Open‐access data can be freely downloaded from the NIAGADS website. Restricted‐access data are available through the NIAGADS Data Sharing Service (dss.niagads.org) and require an approved data access request to ensure compliance with privacy and ethical guidelines and in accordance with the terms outlined by the submitting institutional review boards (IRBs) and the consent provided by research participants. For detailed instructions on accessing specific datasets, including open and restricted data, please visit the NIAGADS website at www.niagads.org .","why":"The data availability statement points to the NIAGADS website, not to a specific repository record with an accession or DOI for this study's data. [majority verdict 'partial' (3/5 passes agreed)]","gain":0.0,"priority":"essential","scored":false},{"key":"f_discovery_metadata","dimension":"F","label":"Description of the dataset as an object","action":"Add a 'Data Records' section: itemise every file in the deposit and every variable or sample it holds, with counts and units. Describe the dataset as an object in its own right, not as a by-product of the findings — this is what makes it discoverable to someone who is not looking for your paper.","anchors":["yes","partial","no"],"verdict":"no","current":0.0,"evidence":null,"why":"The paper does not contain an itemized inventory (section, table, or list) describing the files, variables, or samples of this study's own dataset. It describes the repository's contents in general.","gain":0.0,"priority":"essential","scored":false},{"key":"i_community_standard_vocabulary","dimension":"I","label":"Community standard / vocabulary","action":"Adopt and NAME your domain's data standard — the minimum-information checklist, metadata schema, or ontology your community uses (MIAME/MINSEQE, ISA-Tab, BIDS, an OBO ontology, HL7 FHIR/OMOP) — and say which one you followed. A reporting checklist standardises your paper; it does nothing for your data. In clinical / human-subjects, describe the data with OMOP CDM, CDISC SDTM or HL7 FHIR.","anchors":["yes","partial","no"],"verdict":"no","current":0.0,"evidence":null,"why":"The paper mentions common standards in genetics and genomics, but does not name a specific data or metadata community standard applied to this study's own data. No proper-noun standard is predicated of this study's dataset.","gain":0.0,"priority":"important","scored":false},{"key":"r_provenance_methods","dimension":"R","label":"Provenance of the data","action":"Name the instruments, kits, and software — with versions — that produced the data, not just the verbs. 'Reads were aligned' is not provenance; 'aligned with STAR v2.7.9a to GRCh38' is, because someone else can rerun it.","anchors":["yes","partial","no"],"verdict":"no","current":0.0,"evidence":null,"why":"The paper describes the data production process of the repository, but not for this study's own data. No specific instruments, tools, or kits are named for the generation of this study's dataset. [majority verdict 'no' (4/5 passes agreed)]","gain":0.0,"priority":"important","scored":false},{"key":"r_documentation_codebook","dimension":"R","label":"Documentation / codebook","action":"Ship a README and a data dictionary IN the deposit — every file, every variable, its units, its allowed values, its missing-value codes. It is the cheapest single thing that makes a dataset usable by someone who was not in the lab, and a table buried in the article does not travel with the data.","anchors":["yes","partial","no"],"verdict":"no","current":0.0,"evidence":null,"why":"The paper does not mention a documentation object (README, codebook, etc.) that accompanies this study's own data. No such artefact is predicated.","gain":0.0,"priority":"important","scored":false},{"key":"i_qualified_references","dimension":"I","label":"Identifiers for the resources the data depend on","action":"Cite by identifier every resource the data depend on — the source datasets' accessions, the reference build (GRCh38 / GCA_000001405.28), the cohort application number, the code DOI — and register those relations on the dataset record (IsDerivedFrom, IsSupplementTo). A name is not a link: it cannot be resolved, versioned, or followed by a machine.","anchors":["yes","partial","no"],"verdict":"no","current":0.0,"evidence":null,"why":"The paper references many external resources (e.g., dbGaP, ADSP, etc.), but these are not identifiers for resources that this study's own data depend on or derive from. The study did not produce a dataset that references such resources. [majority verdict 'no' (4/5 passes agreed)]","gain":0.0,"priority":"useful","scored":false},{"key":"a_timeline_retention","dimension":"A","label":"Availability timing & retention","action":"State when the data become available AND how long they will be retained — cite the repository's preservation policy. NIH DMS Element 4 asks for both; most papers give neither.","anchors":["yes","partial","no"],"verdict":"no","current":0.0,"evidence":"NIAGADS maintains a high-quality data collection for ADRD genetic/genomic research","why":"No sentence states when the data become available or how long they persist for this study's own data. The repository's general persistence is not specific to this study.","gain":0.0,"priority":"useful","scored":false}],"suggestions":["Mint or cite a persistent identifier for the dataset — a repository DOI or an accession from a registered repository — and print it in the paper. A bare URL is not persistent: it is the single most common cause of a dead data link five years after publication. For clinical / human-subjects data, deposit in dbGaP or the European Genome-phenome Archive (EGA).","Deposit the data in a repository registered in re3data/FAIRsharing (a domain repository such as GEO, SRA, dbGaP, PRIDE, or a generalist such as Zenodo, Dryad, Dataverse) and name it explicitly in the paper. A lab website is not an archive: it has no retention commitment and no accession. For clinical / human-subjects data, deposit in dbGaP or the European Genome-phenome Archive (EGA).","Remove the precondition or justify it. Release the data at publication with no embargo, no registration wall, and no approval step — NIH's zero-embargo public- access rule (NOT-OD-25-101) has already made 'available at publication' the federal baseline for the article; the data should not lag behind it. For clinical / human-subjects data, deposit in dbGaP or the European Genome-phenome Archive (EGA).","Attach a standard, machine-readable open licence to the deposit — CC0 or CC BY, which is what Horizon Europe and most funders expect — and print the licence identifier in the paper. 'Free to use' is not a licence: it grants nothing a reuser's institution can rely on.","Cite the dataset in the reference list like a publication — creator, year, title, repository, DOI/accession — and cite it in-text where it is used. Only a reference- list entry is machine-readable to Crossref/DataCite, and only a citation lets the data earn credit. Cite the clinical / human-subjects repository accession (e.g. from dbGaP or the European Genome-phenome Archive (EGA)) in the reference list."],"model":"deepseek/deepseek-v4-flash","agent_version":"fair_agent_v8","fulltext_source":"epmc_xml"},"fair_model":"deepseek/deepseek-v4-flash","fair_agent_version":"fair_agent_v8","fair_fulltext_source":"epmc_xml","fair_has_llm":true,"fair_computed_at":"2026-07-20T13:00:05.841957Z","clinical_trials":[],"software_tools":[],"db_accessions":[],"linked_datasets":[],"topics":[]}