{"doi":"10.1038/s41597-023-02726-7","title":"Chronic disease outcome metadata from German observational studies – public availability and FAIR principles","abstract":"Metadata from epidemiological studies, including chronic disease outcome metadata (CDOM), are important to be findable to allow interpretability and reusability. We propose a comprehensive metadata schema and used it to assess public availability and findability of CDOM from German population-based observational studies participating in the consortium National Research Data Infrastructure for Personal Health Data (NFDI4Health). Additionally, principal investigators from the included studies completed a checklist evaluating consistency with FAIR principles (Findability, Accessibility, Interoperability, Reusability) within their studies. Overall, six of sixteen studies had complete publicly available CDOM. The most frequent CDOM source was scientific publications and the most frequently missing metadata were availability of codes of the International Classification of Diseases, Tenth Revision (ICD-10). Principal investigators' main perceived barriers for consistency with FAIR principles were limited human and financial resources. Our results reveal that CDOM from German population-based studies have incomplete availability and limited findability. There is a need to make CDOM publicly available in searchable platforms or metadata catalogues to improve their FAIRness, which requires human and financial resources.","journal":"Scientific Data","year":2023,"id":615,"datarank":0.26876392038420827,"base_score":1.791759469228055,"endowment":1.791759469228055,"self_citation_contribution":0.26876392038420827,"citation_network_contribution":0.0,"self_endowment_contribution":0.26876392038420827,"citer_contribution":0.0,"corpus_percentile":46.053702196908056,"corpus_rank":663,"citation_count":6,"citer_count":3,"citers_with_citation_signal":0,"citers_with_endowment":0,"datacite_reuse_total":0,"is_dataset":true,"is_dataset_confidence":0.6624,"is_oa":true,"file_count":0,"downloads":0,"has_version_chain":false,"published_date":"2023-12-05","fair_score":44.5833,"fair_percentile":43.007915567282325,"algorithm_id":"datarank_citation_only_1hop_v6","ranking_scope":"data_only","authors":[{"id":6215,"name":"Katharina Nimptsch","orcid":"0000-0001-7877-205X","position":1,"is_corresponding":false},{"id":6216,"name":"Wolfgang Ahrens","orcid":"0000-0003-3777-570X","position":2,"is_corresponding":false},{"id":6217,"name":"Hans Martin Hasselhorn","orcid":"0000-0002-0317-6218","position":3,"is_corresponding":false},{"id":6218,"name":"Karl-Heinz Jöckel","orcid":null,"position":4,"is_corresponding":false},{"id":6219,"name":"Verena Katzke","orcid":"0000-0002-6509-6555","position":5,"is_corresponding":false},{"id":6220,"name":"Alexander Kluttig","orcid":"0000-0003-4446-9938","position":6,"is_corresponding":false},{"id":6221,"name":"Birgit Linkohr","orcid":"0000-0002-3387-5685","position":7,"is_corresponding":false},{"id":6222,"name":"Rafael Mikolajczyk","orcid":"0000-0003-1271-7204","position":8,"is_corresponding":false},{"id":6223,"name":"Ute Nöthlings","orcid":"0000-0002-5789-2252","position":9,"is_corresponding":false},{"id":6224,"name":"Ines Perrar","orcid":"0000-0002-2830-6322","position":10,"is_corresponding":false},{"id":2343,"name":"Annette Peters","orcid":"0000-0001-6645-0985","position":11,"is_corresponding":false},{"id":6225,"name":"Carsten O. Schmidt","orcid":null,"position":12,"is_corresponding":false},{"id":6226,"name":"Börge Schmidt","orcid":"0000-0001-6948-7273","position":13,"is_corresponding":false},{"id":6227,"name":"Matthias B. Schulze","orcid":"0000-0002-0830-5277","position":14,"is_corresponding":false},{"id":6228,"name":"Andreas Stang","orcid":"0000-0001-6363-9061","position":15,"is_corresponding":false},{"id":6229,"name":"Hajo Zeeb","orcid":"0000-0001-7509-242X","position":16,"is_corresponding":false},{"id":6230,"name":"Tobias Pischon","orcid":"0000-0003-1568-767X","position":17,"is_corresponding":false},{"id":6231,"name":"Karl‐Heinz Jöckel","orcid":"0000-0002-1987-0255","position":18,"is_corresponding":false},{"id":6232,"name":"Carsten Oliver Schmidt","orcid":"0000-0001-5266-9396","position":19,"is_corresponding":false},{"id":6214,"name":"Carolina Schwedhelm","orcid":"0000-0001-7617-6641","position":0,"is_corresponding":true}],"reference_count":187,"raw_metadata":{"citation_network_status":"fetched"},"created_at":"2026-03-01T18:20:47.508186Z","pmid":"38052810","pmcid":"PMC10698176","fwci":null,"citation_percentile":null,"influential_citations":0,"oa_status":"gold","license":"cc-by","views":0,"total_file_size_bytes":0,"version_count":0,"fair_f":65.0,"fair_a":55.0,"fair_i":25.0,"fair_r":33.3333,"fair_zscore":-0.0568,"fair_rationale":{"fair_score":44.58,"has_llm":true,"dimensions":{"F":{"name":"Findable","score":65.0,"criteria":[{"key":"f_has_doi","label":"Has a persistent DOI","kind":"deterministic","weight":1.0,"fraction":1.0,"signal":"DOI present","rationale":null},{"key":"f_repository_presence","label":"Indexed in repositories / literature DBs","kind":"deterministic","weight":1.0,"fraction":1.0,"signal":"datacite=0, pmcid=True, pmid=True","rationale":null},{"key":"f_persistent_ids","label":"Resolvable scholarly identifiers (OpenAlex)","kind":"deterministic","weight":0.5,"fraction":0.0,"signal":"no OpenAlex id","rationale":null},{"key":"f_metadata_richness","label":"Rich, machine-readable metadata","kind":"llm","weight":1.0,"fraction":0.5,"signal":null,"rationale":"The paper describes a metadata schema and evaluates CDOM completeness across studies, but the metadata itself is not provided in machine-readable form and no persistent identifiers are used."}]},"A":{"name":"Accessible","score":55.0,"criteria":[{"key":"a_open_access","label":"Open Access / files deposited","kind":"deterministic","weight":1.5,"fraction":1.0,"signal":"Open Access","rationale":null},{"key":"a_retrievable","label":"Free full text retrievable","kind":"deterministic","weight":1.0,"fraction":0.0,"signal":"0 OA location(s)","rationale":null},{"key":"a_access_protocol","label":"Clear data/code access protocol","kind":"llm","weight":1.0,"fraction":0.5,"signal":null,"rationale":"Only 7 of 16 studies offer metadata access without registration, and for some studies access requires credentials or is not available, so clear access protocols are not universally described."}]},"I":{"name":"Interoperable","score":25.0,"criteria":[{"key":"i_linked_data","label":"Linked datasets / DataCite relations","kind":"deterministic","weight":1.0,"fraction":0.0,"signal":"linked_datasets=0, datacite=0","rationale":null},{"key":"i_standard_ids","label":"References data via standard accessions","kind":"deterministic","weight":1.0,"fraction":0.0,"signal":"accessions=0, trials=0","rationale":null},{"key":"i_standards","label":"Standard formats, vocabularies & identifiers","kind":"llm","weight":1.0,"fraction":0.5,"signal":null,"rationale":"While ICD-10 is mentioned as a classification system, the paper does not report use of standard formats or vocabularies for the metadata itself, and machine-readability is not addressed."}]},"R":{"name":"Reusable","score":33.33,"criteria":[{"key":"r_license","label":"Clear, open reuse license","kind":"deterministic","weight":1.5,"fraction":0.0,"signal":"no license","rationale":null},{"key":"r_downloads","label":"Demonstrated reuse (downloads)","kind":"deterministic","weight":0.5,"fraction":0.0,"signal":"downloads=0","rationale":null},{"key":"r_version","label":"Versioned / maintained","kind":"deterministic","weight":0.5,"fraction":0.0,"signal":"no version chain","rationale":null},{"key":"r_dataset","label":"Classified as a data resource","kind":"deterministic","weight":0.5,"fraction":1.0,"signal":"is_dataset","rationale":null},{"key":"r_reusability","label":"Data-availability statement, license & reproducibility","kind":"llm","weight":2.0,"fraction":0.5,"signal":null,"rationale":"The paper states a Creative Commons Attribution 4.0 license and provides some data in supplementary information, but does not provide a full data availability statement for the metadata evaluated, and there is no code or reproducibility package."}]}},"suggestions":["Provide the CDOM metadata schema and study-level metadata in a machine-readable format (e.g., JSON-LD, RDF) with persistent identifiers (e.g., DOIs) to improve findability.","Ensure all studies have a clear, automated, and openly accessible data/metadata access protocol (e.g., via a standard API) and indicate access conditions explicitly in the paper.","Use established vocabularies and standards (e.g., MIABIS, SNOMED CT) for the metadata fields and report conformance to community-endorsed formats (e.g., ISA-Tab) to enhance interoperability.","Include a dedicated data availability statement that describes where the full set of CDOM metadata is archived (e.g., in a repository) with a license and how to obtain it for reuse.","Provide all code, analysis scripts, and supplementary metadata files in a public repository to allow full reproducibility of the assessment."],"model":"deepseek/deepseek-v4-flash","agent_version":"fair_agent_v2","fulltext_source":"epmc_xml"},"fair_model":"deepseek/deepseek-v4-flash","fair_agent_version":"fair_agent_v2","fair_fulltext_source":"epmc_xml","fair_has_llm":true,"fair_computed_at":"2026-06-18T00:52:29.321864Z","clinical_trials":[],"software_tools":[],"db_accessions":[],"linked_datasets":[],"topics":[]}