{"doi":"10.1007/s11764-024-01693-1","title":"Quality of life in long-term breast cancer survivors in Sub-Saharan Africa: the African Breast Cancer–Disparities in Outcomes study","abstract":"PURPOSE: In Sub-Saharan Africa (SSA), breast cancer survivors' (BCS) quality of life (QoL) remains understudied. We compared QoL in BCS to cancer-free (CF) women across SSA settings with different levels of development, healthcare systems, ethnic compositions, and HIV prevalence. METHODS: In 2022-2023, all 5 + year BCS from the African Breast Cancer-Disparities in Outcomes study and age-matched CF women from the community setting answered the WHOQOL-BREF questionnaire in Namibia, Nigeria, and Uganda. For each WHOQOL-BREF domain and general item, we estimated BCS-CF adjusted mean differences (AMD) in scores in absolute percentage points (p.p.). RESULTS: Overall, 862 women (BCS 357 vs. CF 505) (mean age ± SD, 57.5 ± 12.5 vs. 55.1 ± 11.2; tertiary education, 30% vs. 20%) were included. BCS reported higher/better overall QoL (AMD (95% CI) 10.65 p.p. (7.56, 13.74), i.e., ~ 40% of a change in QoL category), general health (5.84 (2.71, 8.98)), psychological (3.46 (1.43, 5.49)), social relationships (3.94 (1.25, 6.63)), and environment scores (4.27 (1.88, 6.67)) than CF women. There was no BCS-CF difference for physical health in all settings (1.52 (- 0.82, 3.87)), psychological health in Namibian Black women (0.58 (- 2.90, 4.06)), and social relationships in Nigeria (- 0.33 (- 5.81, 5.14)). BCS reported both lower energy and sexual life satisfaction than CF women. CONCLUSIONS: In SSA, long-term BCS have slightly better QoL than CF women except for physical health. Areas for which BCS scored lower or similar than CF women may indicate BCS' QoL issues. IMPLICATIONS FOR CANCER SURVIVORS: BCS-only studies using cancer-specific QoL questionnaires are needed to better characterize BCS' QoL in SSA.","journal":"Journal of Cancer Survivorship","year":2024,"id":482570,"datarank":0.12221237342491162,"base_score":0.6931471805599453,"endowment":0.6931471805599453,"self_citation_contribution":0.10397207708399181,"citation_network_contribution":0.018240296340919802,"self_endowment_contribution":0.10397207708399181,"citer_contribution":0.018240296340919802,"corpus_percentile":28.66094221397076,"corpus_rank":9223,"citation_count":1,"citer_count":1,"citers_with_citation_signal":1,"citers_with_endowment":1,"datacite_reuse_total":0,"is_dataset":true,"is_dataset_confidence":0.6266,"is_data_producer":false,"deposit_databanks":null,"is_oa":true,"file_count":0,"downloads":0,"has_version_chain":false,"published_date":"2024-01-01","fair_score":29.1667,"fair_percentile":43.01436869458881,"algorithm_id":"datarank_citation_only_1hop_v6","ranking_scope":"data_only","authors":[{"id":13053,"name":"Valerie McCormack","orcid":null,"position":1,"is_corresponding":false},{"id":490912,"name":"Allen Naamala","orcid":"0000-0001-9164-1820","position":2,"is_corresponding":false},{"id":1323525,"name":"Chris Sule Oyamienlen","orcid":null,"position":3,"is_corresponding":false},{"id":491511,"name":"Johanna Pontac","orcid":null,"position":4,"is_corresponding":false},{"id":491507,"name":"Agnes Kaggwa","orcid":null,"position":5,"is_corresponding":false},{"id":491509,"name":"Teopista Nakazibwe","orcid":null,"position":6,"is_corresponding":false},{"id":1323526,"name":"Ann Nteziryayo","orcid":null,"position":7,"is_corresponding":false},{"id":491505,"name":"Esther Ezeigbo","orcid":null,"position":8,"is_corresponding":false},{"id":491504,"name":"Kingsley Iwuoha","orcid":null,"position":9,"is_corresponding":false},{"id":1323527,"name":"Selma Elishi","orcid":null,"position":10,"is_corresponding":false},{"id":432662,"name":"Moses Galukande","orcid":"0000-0001-9086-968X","position":11,"is_corresponding":false},{"id":432665,"name":"Angelica A. Anele","orcid":"0000-0001-8441-5956","position":12,"is_corresponding":false},{"id":432663,"name":"Annelle Zietsman","orcid":"0000-0001-5103-1489","position":13,"is_corresponding":false},{"id":432666,"name":"Milena Foerster","orcid":"0000-0003-3912-1718","position":14,"is_corresponding":false},{"id":390243,"name":"Joachim Schüz","orcid":"0000-0001-9687-2134","position":15,"is_corresponding":false},{"id":55321,"name":"Isabel dos‐Santos‐Silva","orcid":"0000-0002-6596-8798","position":16,"is_corresponding":false},{"id":764240,"name":"Pauline Boucheron","orcid":"0000-0001-8896-0740","position":0,"is_corresponding":true}],"reference_count":39,"raw_metadata":null,"created_at":"2026-07-19T02:07:18.280369Z","pmid":"39656419","pmcid":"PMC12149336","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":33.3333,"fair_a":31.25,"fair_i":0.0,"fair_r":16.6667,"fair_zscore":-0.2091,"fair_rationale":{"fair_score":29.17,"has_llm":true,"taxonomy_version":"fair_taxonomy_v5","dimensions":{"F":{"name":"Findable","score":33.33,"criteria":[{"key":"f_dataset_pid","label":"Persistent identifier for the data","kind":"llm","weight":2.0,"fraction":0.5,"verdict":"partial","evidence":"The datasets generated during and/or analysed during the current study are available on the study website (https:// abc- do. iarc. fr/)","grounded":true,"rationale":"The paper provides a web URL (https://abc-do.iarc.fr/) that is not a persistent identifier scheme (DOI, Handle, ARK, or repository accession). [majority verdict 'partial' (3/5 passes agreed)]","anchors":["RDA-F1-01D — FAIR Data Maturity Model: 'Data is identified by a persistent identifier' (priorit","RDA-F1-02D — FAIR Data Maturity Model: 'Data is identified by a globally unique identifier'","FsF-F1-02D — F-UJI/FAIRsFAIR: 'Data is assigned a persistent identifier'"],"scored":true,"signal":null},{"key":"f_repository_named","label":"Named repository","kind":"llm","weight":2.0,"fraction":0.5,"verdict":"partial","evidence":"available on the study website (https:// abc- do. iarc. fr/)","grounded":true,"rationale":"The holder named is the study website (abc-do.iarc.fr), which is a project website, not a curated repository listed in re3data/FAIRsharing. [majority verdict 'partial' (4/5 passes agreed)]","anchors":["RDA-F4-01M — FAIR Data Maturity Model: metadata is offered so it can be harvested and indexed (","NIH DMS Policy Element 4 (NOT-OD-21-014) — name the repository where data will be archived","NSTC Desirable Characteristics of Data Repositories (2022) — 'Long-Term Sustainability', 'Reten"],"scored":true,"signal":null},{"key":"f_data_availability_statement","label":"Data-availability statement","kind":"llm","weight":2.0,"fraction":0.5,"verdict":"partial","evidence":"Data availability The datasets generated during and/or analysed during the current study are available on the study website (https:// abc- do. iarc. fr/) or from reasonable request to the study PI (Dr. Valerie McCormack, Prof. Isabel dos Santos Silva).","grounded":true,"rationale":"The statement points to a study website (not a repository record) and a person, placing it in Colavizza categories 2/1; thus partial. [majority verdict 'partial' (3/5 passes agreed)]","anchors":["Colavizza, Hrynaszkiewicz, Staden, Whitaker & McGillivray (2020), 'The citation advantage of li","Springer Nature research data policy — Data Availability Statements: standard statement templat","RDA-F3-01M — metadata clearly and explicitly includes the identifier of the data it describes"],"scored":false,"signal":null},{"key":"f_discovery_metadata","label":"Description of the dataset as an object","kind":"llm","weight":2.0,"fraction":0.0,"verdict":"no","evidence":null,"grounded":false,"rationale":"The paper contains no itemised inventory (section, table, or list) describing the dataset's files, variables, or samples; it only states that datasets exist. [majority verdict 'no' (3/5 passes agreed)]","anchors":["RDA-F2-01M — 'Rich metadata is provided to allow discovery' (priority Essential)","FsF-F2-01M — F-UJI: 'Metadata includes descriptive core elements to support data findability'","FsF-R1-01MD — F-UJI: 'Metadata specifies the content of the data'"],"scored":false,"signal":null},{"key":"f_dataset_cited","label":"Dataset formally cited","kind":"llm","weight":1.0,"fraction":0.0,"verdict":"no","evidence":"The datasets generated during and/or analysed during the current study are available on the study website (https://abc-do.iarc.fr/) or from reasonable request to the study PI (Dr. Valerie McCormack, Prof. Isabel dos Santos Silva).","grounded":false,"rationale":"The dataset identifier appears only in the body text (data availability statement) and not as a reference-list entry. [downgraded to 'no' — no verifiable quote from the paper] [majority verdict 'no' (3/5 passes agreed)]","anchors":["FORCE11 Joint Declaration of Data Citation Principles (2014) — data should be cited as a first-","RDA-F3-01M — metadata clearly and explicitly includes the identifier of the data it describes","FsF-F3-01M — F-UJI: 'Metadata includes the identifier of the data it describes'"],"scored":true,"signal":null}]},"A":{"name":"Accessible","score":31.25,"criteria":[{"key":"a_data_openly_accessible","label":"Access route free of preconditions","kind":"llm","weight":2.0,"fraction":0.5,"verdict":"partial","evidence":"The datasets generated during and/or analysed during the current study are available on the study website (https://abc-do.iarc.fr/) or from reasonable request to the study PI (Dr. Valerie McCormack, Prof. Isabel dos Santos Silva).","grounded":false,"rationale":"The text provides a URL route to the data with no stated precondition (e.g., registration, embargo, or application). [downgraded to 'partial' — no verifiable quote from the paper] [majority verdict 'partial' (2/5 passes agreed)]","anchors":["RDA-A1.1-01D — 'Data is accessible through a free access protocol'","FsF-A1-01M — F-UJI: 'Metadata contains access level and access conditions of the data'","NSTC Desirable Characteristics of Data Repositories (2022) — 'Free and Easy Access'"],"scored":true,"signal":null},{"key":"a_access_conditions_stated","label":"Access level labelled","kind":"llm","weight":1.0,"fraction":0.0,"verdict":"no","evidence":"The datasets generated during and/or analysed during the current study are available on the study website (https://abc-do.iarc.fr/) or from reasonable request to the study PI (Dr. Valerie McCormack, Prof. Isabel dos Santos Silva).","grounded":false,"rationale":"The paper describes an access action (website URL or request to PI) but does not label the access level with a standard vocabulary term. [downgraded to 'no' — no verifiable quote from the paper] [majority verdict 'no' (3/5 passes agreed)]","anchors":["FsF-A1-01M — F-UJI: 'Metadata contains access level and access conditions of the data'","RDA-A1-01M — metadata contains information to enable the user to get access to the data","COAR Controlled Vocabularies — Access Rights v1.0 (open / embargoed / restricted / metadata-onl"],"scored":false,"signal":null},{"key":"a_controlled_access_for_sensitive","label":"Gatekeeper for sensitive data","kind":"llm","weight":0.5,"fraction":0.5,"verdict":"partial","evidence":"or from reasonable request to the study PI (Dr. Valerie McCormack, Prof. Isabel dos Santos Silva)","grounded":true,"rationale":"The paper names a natural person (the study PI) as the gatekeeper for the request route, not an institutional committee. [majority verdict 'partial' (3/5 passes agreed)]","anchors":["NIH Genomic Data Sharing Policy (NOT-OD-14-124) — controlled-access via a Data Access Committee","RDA-A1.2-01D — 'Data is accessible through an access protocol that supports authentication and ","NIH DMS Policy Element 5 (NOT-OD-21-014) — Access, Distribution, or Reuse Considerations (conse"],"scored":false,"signal":null},{"key":"a_timeline_retention","label":"Availability timing & retention","kind":"llm","weight":0.5,"fraction":0.0,"verdict":"no","evidence":null,"grounded":false,"rationale":"The paper neither states when the data become available (implied as now) nor how long they persist, so no temporal commitment is made. [majority verdict 'no' (4/5 passes agreed)]","anchors":["NIH DMS Plan Element 4 (NOT-OD-21-014) — Data Preservation, Access, and Associated Timelines","NSTC Desirable Characteristics (2022), Organizational Infrastructure: 'Retention Policy'","RDA-A2-01M — 'Metadata is guaranteed to remain available after data is no longer available'"],"scored":false,"signal":null}]},"I":{"name":"Interoperable","score":0.0,"criteria":[{"key":"i_open_nonproprietary_format","label":"Open file format","kind":"llm","weight":1.0,"fraction":0.0,"verdict":"no","evidence":null,"grounded":false,"rationale":"No file format (open or proprietary) is named for the released data.","anchors":["FsF-R1.3-02D — F-UJI: 'Data is available in a file format recommended by the target research co","RDA-R1.3-02D — data is expressed in a machine-understandable community standard","RDA-I1-01D — data uses a knowledge representation expressed in a standardised format"],"scored":true,"signal":null},{"key":"i_community_standard_vocabulary","label":"Community standard / vocabulary","kind":"llm","weight":1.0,"fraction":0.0,"verdict":"no","evidence":null,"grounded":false,"rationale":"The paper uses WHOQOL-BREF (a questionnaire) but does not name a data/metadata community standard (e.g., MIAME, DOI, or ontology) applied to the data. [majority verdict 'no' (4/5 passes agreed)]","anchors":["RDA-R1.3-01M — 'Metadata complies with a community standard' (priority Essential)","RDA-R1.3-01D — 'Data complies with a community standard'","RDA-I2-01M — '(Meta)data use vocabularies that follow FAIR principles'"],"scored":false,"signal":null},{"key":"i_qualified_references","label":"Identifiers for the resources the data depend on","kind":"llm","weight":0.5,"fraction":0.0,"verdict":"no","evidence":null,"grounded":false,"rationale":"The paper provides no identifier (DOI, accession, RRID) for any external resource used (e.g., the ABC-DO cohort, WHOQOL-BREF, or reference databases).","anchors":["RDA-I3-01M — '(meta)data include references to other (meta)data'","RDA-I3-03M — 'metadata includes qualified references to other metadata'","FsF-I3-01M — F-UJI: 'Metadata includes links between the data and its related entities'"],"scored":false,"signal":null}]},"R":{"name":"Reusable","score":16.67,"criteria":[{"key":"r_reuse_license","label":"Reuse licence","kind":"llm","weight":2.0,"fraction":0.0,"verdict":"no","evidence":null,"grounded":false,"rationale":"The Creative Commons Attribution 4.0 license is stated for the article, not for the data; no license is explicitly applied to the dataset.","anchors":["RDA-R1.1-01M — 'Metadata includes information about the licence under which the data can be reu","RDA-R1.1-02M — 'Metadata refers to a standard reuse licence'","RDA-R1.1-03M — 'Metadata refers to a machine-understandable reuse licence'"],"scored":true,"signal":null},{"key":"r_provenance_methods","label":"Provenance of the data","kind":"llm","weight":1.0,"fraction":0.5,"verdict":"partial","evidence":"QoL information was collected during a one-off interview (i) at BCS’ last ABC-DO follow-up phone call and (ii) face-to-face at recruitment for CF women.","grounded":true,"rationale":"The data collection is described in generic terms without naming any specific instrument, kit, or software version used to produce the data. [majority verdict 'partial' (2/5 passes agreed)]","anchors":["RDA-R1.2-01M — 'Metadata includes provenance information according to community- specific standa","FsF-R1.2-01M — F-UJI: 'Metadata includes provenance information about data creation or generati","W3C PROV-O (W3C Recommendation, 2013) — the entity/activity/agent model of provenance"],"scored":false,"signal":null},{"key":"r_documentation_codebook","label":"Documentation / codebook","kind":"llm","weight":1.0,"fraction":0.0,"verdict":"no","evidence":null,"grounded":false,"rationale":"The paper does not mention a README, data dictionary, or codebook accompanying the data, nor does it contain a variable-definition table inside the article. [majority verdict 'no' (4/5 passes agreed)]","anchors":["RDA-R1-01M — '(Meta)data are richly described with a plurality of accurate and relevant attribu","FsF-R1-01MD — F-UJI: 'Metadata specifies the content of the data'","NIH DMS Policy Element 3 (NOT-OD-21-014) — Standards (documentation and metadata to accompany t"],"scored":false,"signal":null},{"key":"r_versioning","label":"Snapshot identified","kind":"llm","weight":0.5,"fraction":0.0,"verdict":"no","evidence":null,"grounded":false,"rationale":"The paper gives no version token or date for the dataset snapshot; it only refers to 'the datasets generated during and/or analysed during the current study'. [majority verdict 'no' (4/5 passes agreed)]","anchors":["DataCite Metadata Schema 4.6 — the 'Version' property","RDA-R1.2-01M — provenance information (which version was used is provenance)","NSTC Desirable Characteristics of Data Repositories (2022) — 'Provenance', 'Retention Policy'"],"scored":true,"signal":null},{"key":"x_code_availability","label":"Analysis code available","kind":"llm","weight":1.0,"fraction":0.0,"verdict":"no","evidence":null,"grounded":false,"rationale":"The paper does not mention any code availability; only the use of STATA v17 is noted without providing code.","anchors":["NIH DMS Policy Element 2 (NOT-OD-21-014) — 'Related Tools, Software and/or Code'","FAIR4RS Principles v1.0 (Chue Hong et al., 2022; RDA/FORCE11/ReSA) — FAIR Principles for Resear","FORCE11 Software Citation Principles (Smith, Katz & Niemeyer, 2016, PeerJ CS 2:e86)"],"scored":true,"signal":null},{"key":"x_funding_attribution","label":"Funder and award number","kind":"llm","weight":0.5,"fraction":1.0,"verdict":"yes","evidence":"The ABC-DO study and this QoL survey are funded by the US NIH National Cancer Institute (1R01CA244559)","grounded":true,"rationale":"The paper provides an alphanumeric award/grant number (1R01CA244559) attached to a named funder, satisfying the 'yes' class.","anchors":["DataCite Metadata Schema 4.6 — 'FundingReference' property (funderName, funderIdentifier, award","Crossref Funder Registry — canonical funder identifiers for funding metadata","RDA-F2-01M — rich metadata provided to allow discovery (funding is part of the descriptive reco"],"scored":true,"signal":null}]}},"actions":[{"key":"r_reuse_license","dimension":"R","label":"Reuse licence","action":"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.","anchors":["yes","partial","no"],"verdict":"no","current":0.0,"evidence":null,"why":"The Creative Commons Attribution 4.0 license is stated for the article, not for the data; no license is explicitly applied to the dataset.","gain":16.67,"priority":"essential","scored":true},{"key":"f_dataset_pid","dimension":"F","label":"Persistent identifier for the data","action":"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).","anchors":["yes","partial","no"],"verdict":"partial","current":0.5,"evidence":"The datasets generated during and/or analysed during the current study are available on the study website (https:// abc- do. iarc. fr/)","why":"The paper provides a web URL (https://abc-do.iarc.fr/) that is not a persistent identifier scheme (DOI, Handle, ARK, or repository accession). [majority verdict 'partial' (3/5 passes agreed)]","gain":8.33,"priority":"essential","scored":true},{"key":"f_repository_named","dimension":"F","label":"Named repository","action":"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).","anchors":["yes","partial","no"],"verdict":"partial","current":0.5,"evidence":"available on the study website (https:// abc- do. iarc. fr/)","why":"The holder named is the study website (abc-do.iarc.fr), which is a project website, not a curated repository listed in re3data/FAIRsharing. [majority verdict 'partial' (4/5 passes agreed)]","gain":8.33,"priority":"essential","scored":true},{"key":"a_data_openly_accessible","dimension":"A","label":"Access route free of preconditions","action":"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).","anchors":["yes","partial","no"],"verdict":"partial","current":0.5,"evidence":"The datasets generated during and/or analysed during the current study are available on the study website (https://abc-do.iarc.fr/) or from reasonable request to the study PI (Dr. Valerie McCormack, Prof. Isabel dos Santos Silva).","why":"The text provides a URL route to the data with no stated precondition (e.g., registration, embargo, or application). [downgraded to 'partial' — no verifiable quote from the paper] [majority verdict 'partial' (2/5 passes agreed)]","gain":8.33,"priority":"essential","scored":true},{"key":"f_dataset_cited","dimension":"F","label":"Dataset formally cited","action":"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.","anchors":["yes","partial","no"],"verdict":"no","current":0.0,"evidence":"The datasets generated during and/or analysed during the current study are available on the study website (https://abc-do.iarc.fr/) or from reasonable request to the study PI (Dr. Valerie McCormack, Prof. Isabel dos Santos Silva).","why":"The dataset identifier appears only in the body text (data availability statement) and not as a reference-list entry. [downgraded to 'no' — no verifiable quote from the paper] [majority verdict 'no' (3/5 passes agreed)]","gain":8.33,"priority":"important","scored":true},{"key":"i_open_nonproprietary_format","dimension":"I","label":"Open file format","action":"Release the data in an open, community-standard format (CSV/TSV, JSON, HDF5, NetCDF, FASTQ, VCF, NIfTI…) instead of — or alongside — any proprietary or instrument-native format, and name the format in the paper. A dataset that needs a €2,000 licence to open is not reusable.","anchors":["yes","partial","no"],"verdict":"no","current":0.0,"evidence":null,"why":"No file format (open or proprietary) is named for the released data.","gain":8.33,"priority":"important","scored":true},{"key":"x_code_availability","dimension":"R","label":"Analysis code available","action":"Publish the analysis code in a public forge, archive a tagged release with a DOI (Zenodo/Software Heritage), and cite that DOI in the paper. NIH DMS Element 2 asks for the tools and code, not only the data — and 'available on request' is not a locator. Archive the analysis code in a versioned repository (GitHub + a Zenodo release DOI).","anchors":["yes","partial","no"],"verdict":"no","current":0.0,"evidence":null,"why":"The paper does not mention any code availability; only the use of STATA v17 is noted without providing code.","gain":8.33,"priority":"important","scored":true},{"key":"r_versioning","dimension":"R","label":"Snapshot identified","action":"Version the deposit and cite the exact version analysed (a version-specific DOI, or an accession with its version suffix). A reader reproducing your work against 'the current release' is reproducing it against a different dataset.","anchors":["yes","partial","no"],"verdict":"no","current":0.0,"evidence":null,"why":"The paper gives no version token or date for the dataset snapshot; it only refers to 'the datasets generated during and/or analysed during the current study'. [majority verdict 'no' (4/5 passes agreed)]","gain":4.17,"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 The datasets generated during and/or analysed during the current study are available on the study website (https:// abc- do. iarc. fr/) or from reasonable request to the study PI (Dr. Valerie McCormack, Prof. Isabel dos Santos Silva).","why":"The statement points to a study website (not a repository record) and a person, placing it in Colavizza categories 2/1; thus partial. [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 contains no itemised inventory (section, table, or list) describing the dataset's files, variables, or samples; it only states that datasets exist. [majority verdict 'no' (3/5 passes agreed)]","gain":0.0,"priority":"essential","scored":false},{"key":"a_access_conditions_stated","dimension":"A","label":"Access level labelled","action":"State the access level in words, using the standard vocabulary: 'These data are open access' / 'These data are controlled access'. A reader — and a harvester — should not have to infer the access level from the presence of a download link.","anchors":["yes","partial","no"],"verdict":"no","current":0.0,"evidence":"The datasets generated during and/or analysed during the current study are available on the study website (https://abc-do.iarc.fr/) or from reasonable request to the study PI (Dr. Valerie McCormack, Prof. Isabel dos Santos Silva).","why":"The paper describes an access action (website URL or request to PI) but does not label the access level with a standard vocabulary term. [downgraded to 'no' — no verifiable quote from the paper] [majority verdict 'no' (3/5 passes agreed)]","gain":0.0,"priority":"important","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 uses WHOQOL-BREF (a questionnaire) but does not name a data/metadata community standard (e.g., MIAME, DOI, or ontology) applied to the data. [majority verdict 'no' (4/5 passes agreed)]","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":"partial","current":0.5,"evidence":"QoL information was collected during a one-off interview (i) at BCS’ last ABC-DO follow-up phone call and (ii) face-to-face at recruitment for CF women.","why":"The data collection is described in generic terms without naming any specific instrument, kit, or software version used to produce the data. [majority verdict 'partial' (2/5 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 README, data dictionary, or codebook accompanying the data, nor does it contain a variable-definition table inside the article. [majority verdict 'no' (4/5 passes agreed)]","gain":0.0,"priority":"important","scored":false},{"key":"a_controlled_access_for_sensitive","dimension":"A","label":"Gatekeeper for sensitive data","action":"Route sensitive data through an institutional gatekeeper — deposit in a controlled- access repository (dbGaP, EGA) with a Data Access Committee and a published DUA — rather than through the corresponding author's inbox. An author-gated dataset dies with the author's email address, and 'on reasonable request' has been shown repeatedly not to yield data. For sensitive/human clinical / human-subjects data, use a controlled-access repository such as dbGaP or EGA.","anchors":["yes","partial","no"],"verdict":"partial","current":0.5,"evidence":"or from reasonable request to the study PI (Dr. Valerie McCormack, Prof. Isabel dos Santos Silva)","why":"The paper names a natural person (the study PI) as the gatekeeper for the request route, not an institutional committee. [majority verdict 'partial' (3/5 passes agreed)]","gain":0.0,"priority":"useful","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 provides no identifier (DOI, accession, RRID) for any external resource used (e.g., the ABC-DO cohort, WHOQOL-BREF, or reference databases).","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":null,"why":"The paper neither states when the data become available (implied as now) nor how long they persist, so no temporal commitment is made. [majority verdict 'no' (4/5 passes agreed)]","gain":0.0,"priority":"useful","scored":false}],"suggestions":["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.","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).","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":"unpaywall_pdf"},"fair_model":"deepseek/deepseek-v4-flash","fair_agent_version":"fair_agent_v8","fair_fulltext_source":"unpaywall_pdf","fair_has_llm":true,"fair_computed_at":"2026-07-20T13:47:55.110197Z","clinical_trials":[],"software_tools":[],"db_accessions":[],"linked_datasets":[],"topics":[]}