EURO-NMD registry: federated FAIR infrastructure, innovative technologies and concepts of a patient-centred registry for rare neuromuscular disorders is a dataset published in Orphanet Journal of Rare Diseases (2024). On theSindex it has a DataRank of 1.2, placing it in the top 17.3% of the data-sharing corpus. It has been cited 22 times, with 18 citing works in its 1-hop citation network. Its calibrated FAIR score is 46/100.
Ranks in the top 17% for downstream scientific impact
Linked data & code
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.
“https://eu-rd-platform.jrc.ec.europa.eu/erdridor/register/6501”
The only identifier given for the dataset is a URL (the ERDRI registration page), not a PID scheme like DOI or Handle. [majority verdict 'partial' (3/5 passes agreed)]
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'
“EURO-NMD registry”
The named holder is the EURO-NMD registry, a disease-specific registry not listed in re3data/FAIRsharing as a standard repository. [majority verdict 'partial' (4/5 passes agreed)]
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
No identifier for the dataset appears in the reference list or body text; the paper's own DOI is for the article, not the data. [majority verdict 'no' (4/5 passes agreed)]
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
“Access to data in the registry itself, as well as to the REDCap Codebook listing all data elements captured, is available to authorised users under conditions governed by the registry data access policy as described in this publication and set out on the registry website at https://registry.ern-euro-nmd.eu .”
The statement points to a registry website and conditions, not to a repository record with a direct link to the data (Colavizza category 1/2 mixed). [majority verdict 'partial' (4/5 passes agreed)]
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 registry has three-layered datasets, with European Commission-mandated data elements (EU-CDEs), a set of cross-neuromuscular data elements (NMD-CDEs) and a dataset of disease-specific data elements that function modularly (DS-DEs).”
The dataset is described in running prose, not in an itemised inventory (section, table, or enumerated list). [majority verdict 'partial' (3/5 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'
“Data are available in aggregated and/or pseudonymised formats to all stakeholders to develop projects, policies or studies, following approval by the Data Access Committee of the EURO-NMD Registry Hub project”
The access route requires approval by the Data Access Committee, which is a defined, followable 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
“Access to data in the registry itself, as well as to the REDCap Codebook listing all data elements captured, is available to authorised users under conditions governed by the registry data access policy as described in this publication and set out on the registry website at https://registry.ern-euro-nmd.eu .”
The paper describes an access action (available to authorised users under conditions) but does not label the access level with a standard term like 'open access' or 'restricted 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
“following approval by the Data Access Committee of the EURO-NMD Registry Hub project”
The paper names an institutional gatekeeper (Data Access Committee) for accessing sensitive human-subject data. [majority verdict 'yes' (4/5 passes agreed)]
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
No sentence in the paper states how long the data will remain available or makes any persistence commitment.
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'
“download predefined data exports in different formats (e.g., CSV, SPSS, SAS, R, Stata, CDISC)”
CSV is an open, community-standard format named for the data. [majority verdict 'yes' (3/5 passes agreed)]
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
“The use of the Human Phenotype Ontology (HPO)”
The paper names multiple community standards (HPO, ORDO, HGVS, OMIM) that are registered in FAIRsharing.
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 (DOI, accession, RRID, etc.) is given for any external resource that the data depend on or derive from. [majority verdict 'no' (4/5 passes agreed)]
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'
“The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article”— not found in the paper; verdict downgraded
CC0 is an open standard licence from the SPDX list. [downgraded to 'partial' — no verifiable quote from the paper] [majority verdict 'partial' (4/5 passes agreed)]
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'
No version token or date is given for the dataset snapshot.
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 locator is given for the study's own code; the only code mentioned is third-party (FAIR Evaluator, REDCap).
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)
“Grant Agreement: 947598”
The paper provides a grant number (947598) attached to the named funder (European Union's 3rd EU Health Programme).
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
“The EURO-NMD Registry is housed within the secure hospital IT infrastructure of the University Medical Centre Freiburg in Germany.”
The data production is described in generic terms (housed, collected, entered) without naming specific instruments, kits, or software versions. [majority verdict 'partial' (4/5 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
“Access to data in the registry itself, as well as to the REDCap Codebook listing all data elements captured, is available to authorised users”
The paper names a codebook that accompanies the data and defines the data elements. [majority verdict 'yes' (4/5 passes agreed)]
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 →
Base Score Contribution
0.470
From this paper's citation signal
Citation Network Contribution
0.717
From 12 citing papers with measurable signal
Ranked by each citer's contribution to N(p) — log1p(Cq) divided by its reference count — out of 18 citers.
Third Health Programme
Grant: 947598
Medical Research Council
Grant: MR/N027302/2
Medical Research Council
Grant: G1000848
Ataxia UK
Grant: ZHORVATH
Medical Research Council
Grant: MR/V009346/1
Wellcome Trust
Grant: 109915/A/15/Z
Medical Research Council
Grant: MR/N025431/2
Canadian Institutes of Health Research
Grant: unidentified
unidentified
FWCI
6.37
Citation Percentile
1.0%
Citation Trend
Fields of Study
MeSH Terms
Keywords
Sustainable Development Goals
EURO-NMD Registry Codebook
EURO-NMD Registry Codebook