The IRDiRC Chrysalis Task Force: making rare disease research attractive to companies is a dataset published in Maryland law review (2023). On theSindex it has a DataRank of 0.476, placing it in the top 40.1% of the data-sharing corpus. It has been cited 7 times, with 4 citing works in its 1-hop citation network. Its calibrated FAIR score is 50/100.
Ranks in the top 40% 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.
“The initial survey and results that support the analysis in this paper are available in Zenodo (Rare Disease Community) with the identifier https://zenodo.org/communities/rare-diseases/”
The paper provides a web URL for the data, not a persistent identifier in a recognized PID scheme.
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 initial survey and results that support the analysis in this paper are available in Zenodo (Rare Disease Community) with the identifier https://zenodo.org/communities/rare-diseases/”
The paper names Zenodo, a data repository listed in re3data.
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 initial survey and results that support the analysis in this paper are available in Zenodo (Rare Disease Community) with the identifier https://zenodo.org/communities/rare-diseases/”
The dataset identifier appears only in the body text, not as a reference-list entry.
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
“The initial survey and results that support the analysis in this paper are available in Zenodo (Rare Disease Community) with the identifier https://zenodo.org/communities/rare-diseases/”
The statement points to a Zenodo community page, not a specific dataset record. [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
No structured itemized inventory of the dataset's files or variables is provided. [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 initial survey and results that support the analysis in this paper are available in Zenodo (Rare Disease Community) with the identifier https://zenodo.org/communities/rare-diseases/”
The data are stated to be available in a public repository with no stated 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 initial survey and results that support the analysis in this paper are available in Zenodo (Rare Disease Community) with the identifier https://zenodo.org/communities/rare-diseases/”
The paper describes the availability action but does not apply an explicit access-level label from the standard vocabulary. [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 study does not involve sensitive human data, and 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 initial survey and results that support the analysis in this paper are available in Zenodo (Rare Disease Community) with the identifier https://zenodo.org/communities/rare-diseases/”
The paper states the data are available in Zenodo, indicating current availability, but does not specify retention duration. [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 mentioned for the data.
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 data or metadata community standard is mentioned.
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 identifiers for external resources are given. [majority verdict 'no' (3/5 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'
No reuse license is stated for the data.
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 data.
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 availability is stated.
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 IRDiRC Chrysalis Task Force was supported by the Scientific Secretariat of IRDiRC, funded by the European Union through the European Joint Programme on Rare Disease (EJP RD) under the European Union’s Horizon 2020 Research and Innovation Programme Grant Agreement No. 825575.”
The paper provides a specific grant number.
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
“interviews were conducted by members of the Task Force using Microsoft Teams.”— not found in the paper; verdict downgraded
The paper names a specific platform (Microsoft Teams) used for data collection. [downgraded to 'partial' — no verifiable quote from the paper] [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
“The survey questions are available in the Supplemental Material.”— not found in the paper; verdict downgraded
Variable definitions are provided in the article's supplementary material, not in a separate file shipped with the data. [downgraded to 'no' — no verifiable quote from the paper]
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
0.312
From this paper's citation signal
Citation Network Contribution
0.164
From 4 citing papers with measurable signal
Ranked by each citer's contribution to N(p) — log1p(Cq) divided by its reference count — out of 4 citers.
European Union’s Horizon 2020 research and innovation programme
Grant: 825575
European Joint Programme on Rare Diseases
FWCI
0.64
Citation Percentile
0.6%
Citation Trend
Fields of Study
Keywords
Sustainable Development Goals
sj-docx-1-trd-10.1177_26330040231188979 – Supplemental material for The IRDiRC Chrysalis Task Force: making rare disease research attractive to companies
sj-docx-1-trd-10.1177_26330040231188979 – Supplemental material for The IRDiRC Chrysalis Task Force: making rare disease research attractive to companies