A community-engaged approach to developing common data elements: a case study from the RADx-UP Long COVID common data elements Task Force is a dataset published in JAMIA Open (2025). On theSindex it has a DataRank of 0, placing it in the top 100% of the data-sharing corpus. Its calibrated FAIR score is 54/100.
Ranks in the top 100% for downstream scientific impact
DataRank reads this dataset's downstream impact straight off the citation graph — no black box, no proprietary weighting. How is this computed?
FAIR checklist signals are shown for context only and do not affect DataRank scoring.
Full FAIR picture · advisory
The headline score is computed from the scored criteria — the fact-shaped checks (a repository, an accession, a licence) that two independent models agree on. The advisory criteria below are real FAIR guidance but rest on judgment calls that models read differently, so they inform without moving the number.
“The Long COVID CDEs are available at https://radx-up.org/research/cdes/ and from the RADx Data Hub.”
The given location is a web URL, not a persistent identifier scheme (no DOI, Handle, ARK, or repository accession).
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'
“The Long COVID CDEs are available at https://radx-up.org/research/cdes/ and from the RADx Data Hub.”
The NIH RADx Data Hub is a named repository.
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
“The Long COVID CDEs are available at https://radx-up.org/research/cdes/ and from the RADx Data Hub.”
The dataset identifier (URL) appears only in the body text, not in the reference list.
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'
Advisory · not in the published score
“RADx-UP project data collected using the Long COVID CDE data will be available from the NIH RADx Data Hub. The Long COVID CDEs are available at https://radx-up.org/research/cdes/ and from the RADx Data Hub.”
The statement points to a repository (RADx Data Hub) and a URL, which is Colavizza category 3.
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
“The novel CDEs identified COVID-19 infection treatments, long-term symptoms experienced after the first COVID-19 infection, participants’ lived experience with Long COVID, and impact on quality of life.”— not found in the paper; verdict downgraded
The dataset content is described in running prose, not in an itemised inventory. [downgraded to 'no' — no verifiable quote from the paper] [majority verdict 'no' (4/5 passes agreed)]
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'
“The Long COVID CDEs are available at https://radx-up.org/research/cdes/ and from the RADx Data Hub.”
The CDEs are stated to be available at a public URL with no precondition.
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'
Advisory · not in the published score
“The Long COVID CDEs are available at https://radx-up.org/research/cdes/ and from the RADx Data Hub.”
The paper describes where the data can be obtained but does not apply an explicit access-level label such as 'open access'. [majority verdict 'partial' (4/5 passes agreed)]
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
The CDEs are not sensitive human-subject data; no gatekeeper is named.
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
“The Long COVID CDEs are available at https://radx-up.org/research/cdes/ and from the RADx Data Hub.”
The paper states the CDEs are available now but makes no persistence commitment. [majority verdict 'partial' (3/5 passes agreed)]
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'
No file format is named for the CDEs.
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
Advisory · not in the published score
No community-standard vocabulary (e.g., SNOMED CT, LOINC) is applied to the CDEs; the paper only recommends future alignment.
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'
No identifier for an external resource (e.g., source dataset, reference database) is given.
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'
No reuse licence is stated for the CDEs.
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'
“The Long COVID CDEs were officially rolled out as part of the RADx-UP tier 2 CDEs version 1.7 on January 13, 2023”
A version token ('version 1.7') is explicitly stated for the data. [majority verdict 'yes' (4/5 passes agreed)]
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'
No code is mentioned as part of this study; no code locator is given.
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)
“The RADx-UP CDCC is funded through NIH emergency cooperative agreement 1U24MD016258.”
An award number (1U24MD016258) is provided for the funding.
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
Advisory · not in the published score
“Feedback from the Task Force, following both the CDEs starter pack feedback survey and the first focus group session, made it clear that the RECOVER CDEs were marked by many of the drawbacks outlined in Carrillo et al,”
The production of the CDEs is described in generic prose without naming specific instruments or software. [majority verdict 'partial' (3/5 passes agreed)]
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
“see Supplementary CDEs S2 and S3 online”
The variable definitions are provided in supplementary materials accompanying the article, not in a separate documentation object shipped with the data.
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
Calibrated FAIR score — a parallel quality metric, independent of the DataRank citation score. See the full evaluation →
NIH
Grant: 1U24MD016258
NIMHD NIH HHS
Grant: U24 MD016258
National Institutes of Health
Grant: 3U24MD016258-03S1
RADx-UP CDCC
FWCI
0.00
Citation Percentile
0.1%
Fields of Study
Keywords
Sustainable Development Goals