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Governance and Coordination

This index covers entities whose primary activity is governing, standardising, regulating, or coordinating research: policy bodies, legal frameworks, coordinating networks, standards consortia, and working groups. Entities whose primary role is conducting or funding research, or providing direct services to researchers, belong in Actors or Resources.

Open science policy

Policy mandates, monitoring, and open science frameworks at all scopes — French national, European, and international.

  • ANR Open Science Policy mandates a Data Management Plan, open access publication, and FAIR Principles deposit for all ANR-funded projects.
  • Barcelona Declaration (Barcelona Declaration on Open Research Information) commits signatories to make research information open by default, the counterpart to DORA and CoARA.
  • CNRS Open Science is the CNRS institutional open science policy.
  • cOAlition S is the international funder consortium behind Plan S, requiring immediate open access for publicly funded research.
  • COAR (Confederation of Open Access Repositories) governs OA repository interoperability standards, including the Next Generation Repositories framework and COAR Notify.
  • Science Europe is the association of European research funding and performing organisations, which established cOAlition S and co-governs EOSC.
  • CoSO (Comité pour la Science Ouverte) coordinates the implementation of Ouvrir la Science across French research organisations.
  • CNIL (Commission Nationale de l’Informatique et des Libertés) is France’s national data protection authority and designated GDPR supervisory authority.
  • CoARA (Coalition for Advancing Research Assessment) is the European institutional reform agreement to transform research assessment in line with DORA principles.
  • DORA (San Francisco Declaration on Research Assessment) calls on funders, institutions, and publishers to end use of the Impact Factor as a surrogate for research quality.
  • Leiden Manifesto (Leiden Manifesto for Research Metrics) is a set of principles for the responsible use of metrics in research evaluation, paired with DORA.
  • DFG Open Science (Deutsche Forschungsgemeinschaft) requires data management plans and open access for DFG-funded projects, and coordinates the NFDI initiative.
  • ECoC (European Code of Conduct for Research Integrity) is ALLEA’s framework for research integrity, recognised as the primary standard for Horizon-funded projects.
  • EC Open Science Policy sets Horizon Europe open-access mandates and provides the policy foundation for EOSC and EHDS.
  • GFRN (Global Federation of Reproducibility Networks) is the international coordinating network for national reproducibility networks.
  • Open Science NL is the Dutch national open science programme within NWO.
  • Inserm Open Science is the Inserm institutional open science policy.
  • NIH Open Science Policy is the NIH Data Management and Sharing Policy, requiring data management plans and open data deposit for NIH-funded research.
  • Ouvrir la Science is the French national open science plan covering publications, research data, software, and training.
  • UNESCO Open Science Recommendation is the global framework providing internationally agreed principles and definitions for open science policy.

Research infrastructures

National and European research infrastructure networks, ERICs, data commons, and shared computing environments. French national facility networks (France BioImaging, France Génomique, France Life Imaging, IFB, NeurATRIS, Huma-Num) and IBiSA are listed under Actors.

  • ARDC (Australian Research Data Commons) is Australia’s national FAIR and RDM infrastructure and an RDA partner.
  • BBMRI-ERIC (Biobanking and Biomolecular Resources Research Infrastructure) provides a federated catalogue of European biobanks and an access negotiation platform.
  • CONP (Canadian Open Neuroscience Platform) provides a federated BIDS data portal using DataLad for version control.
  • EATRIS (European Advanced Translational Research Infrastructure) is the European translational medicine infrastructure focused on biomarker development and clinical trial support.
  • ECRIN (European Clinical Research Infrastructure Network) supports multinational academic clinical trials through national partner networks.
  • ELIXIR is the European life science data infrastructure, with the French node IFB listed in Actors.
  • EOSC (European Open Science Cloud) provides federated open science services and infrastructure for EU-funded research.
  • ESFRI (European Strategy Forum on Research Infrastructures) produced the ESFRI Roadmap and the ERIC legal framework underpinning ELIXIR, BBMRI-ERIC, EATRIS, ECRIN, and Euro-BioImaging.
  • Euro-BioImaging is the European bioimaging infrastructure, with the French node France BioImaging listed in Actors.
  • F-CRIN (French Clinical Research Infrastructure Network) is the French national partner of ECRIN.
  • GDI (European Genomic Data Infrastructure) deploys federated genomic data access across the EU, implementing the 1+MG Framework with EGA national nodes.
  • Health-RI is the Dutch national integrated health-data infrastructure, the umbrella over BBMRI-NL, ELIXIR-NL, and EATRIS-NL.
  • INBS (Infrastructures Nationales en Biologie Santé) is the umbrella coordinating French national biology and health infrastructures, including France BioImaging, France Life Imaging, and IFB.
  • OpenAIRE is the EU open science infrastructure that operates Zenodo and monitors Horizon Europe open-access compliance.
  • NFDI (Nationale Forschungsdateninfrastruktur) is Germany’s national research data infrastructure, coordinating thematic consortia including NFDI Neuroscience, NFDI4Health, and NFDI4Bioimage.
  • NFDI4Bioimage is the NFDI consortium for microscopy and bioimage analysis data, promoting OME File Formats and coordinating with Euro-BioImaging.
  • NFDI4Health is the NFDI consortium for personal health data, aligning with HL7 FHIR and the EHDS secondary-use framework.
  • NFDI Neuroscience (National Research Data Infrastructure for Neuroscience) builds FAIR research data management for the German neuroscience community in partnership with EBRAINS.
  • TDCC (Thematic Digital Competence Centres) are Dutch national research-data-management networks, the Life Sciences pillar working alongside Health-RI and DANS.

Health data and regulation

Legal frameworks, regulatory authorities, health IT standardisation, and health data access governance.

Data protection authorities

  • AP (Autoriteit Persoonsgegevens) is the Netherlands’ national data protection authority.
  • BfDI (Bundesbeauftragter für den Datenschutz und die Informationsfreiheit) is Germany’s federal data protection commissioner, with jurisdiction over federal research institutions including NFDI.
  • CNIL (Commission Nationale de l’Informatique et des Libertés) is the French data protection authority, issuing authorisations for health and genomic research data.
  • EDPB (European Data Protection Board) coordinates national data protection authorities and issues binding cross-border decisions under GDPR.
  • FDPIC (Federal Data Protection and Information Commissioner) is Switzerland’s data protection authority, relevant to Swiss contributions to EBRAINS.
  • ICO (Information Commissioner’s Office) is the UK’s data protection authority, enforcing UK GDPR for UK Biobank and HDR UK.
  • IMY (Integritetsskyddsmyndigheten) is Sweden’s data protection authority, overseeing Swedish biobank and neuroscience data processing.
  • OPC (Office of the Privacy Commissioner of Canada) is Canada’s federal privacy authority, relevant to data sharing through CONP.

Health data governance

  • ANS (Agence du Numérique en Santé) is the French health IT standardisation agency, managing the French SNOMED CT release and HL7 FHIR implementation guides.
  • Code de la Sante Publique (Code de la Santé Publique) is the French public health law governing health data access, biobanking, and clinical research authorisations.
  • EHDS (European Health Data Space Regulation) mandates HL7 FHIR for EHR exchange.
  • EMA (European Medicines Agency) is the EU regulatory authority for medicines, mandating CDISC standards and operating the CTIS clinical trials system.
  • GDPR (General Data Protection Regulation) is the EU legal framework governing personal data processing, with health and genetic data as special categories under Article 9.
  • HIPAA (Health Insurance Portability and Accountability Act) is the US federal health-privacy law whose de-identification standards set the threshold for sharing US health, clinical, and genomic data.
  • ORAD (Organisme Responsable de l’Accès aux Données de Santé) is the French health data access body to be designated under EHDS, with the Health Data Hub as primary candidate.
  • HDR UK (Health Data Research UK) is the UK national health data science institute, working with FAIR Principles, OMOP CDM, and HL7 FHIR.
  • IHE (Integrating the Healthcare Enterprise) produces implementation profiles specifying how HL7 FHIR, DICOM, and SNOMED CT are used together.

Data standards and reproducibility

International bodies that govern technical data standards, interoperability frameworks, and reproducibility infrastructure.

Research alliances and funding frameworks

Multi-institute alliances, transnational funding programmes, and clinical research consortia.

  • ABDN (African Brain Data Network) is a network building FAIR data capacity for African neuroimaging.

  • ALBA Network is a global initiative promoting equity, diversity, and inclusion in the brain sciences, operating as a division of FENS.

  • BRIDGE (Brain Research International Data Governance & Exchange) is an INCF-hosted initiative building an International Data Governance Framework for cross-border sharing of brain and mental health data.

  • CAMERA (Consortium for Advancement of MRI Education and Research in Africa) builds sustainable MRI access across Africa, coordinated from the MNI and parent to the AfNiA archive.

  • Human Brain Project was the EU Horizon Flagship initiative that created EBRAINS and the Julich Brain Atlas, and within which development of openMINDS began.

  • ARDC (Australian Research Data Commons) is Australia’s national FAIR data infrastructure, coordinating data services under the NCRIS programme.

  • IBRO (International Brain Research Organization) is the global neuroscience coordinating body, running training and capacity-building programmes.

  • IRDIRC (International Rare Diseases Research Consortium) coordinates global rare disease research and data sharing standards.

  • JPND (Joint Programme Neurodegenerative Disease Research) is the main European transnational funding framework for neurodegeneration.

  • MUDIS4LS is an IFB-coordinated funded project building FAIR digital infrastructure for French life sciences.

  • YODA Project (Yale Open Data Access) takes independent jurisdiction over access decisions for clinical trial data, removing conflicts of interest between data holders and requesters.

  • SPHN (Swiss Personalized Health Network) makes clinical health data from Swiss university hospitals interoperable for research, aligned with HL7 FHIR and the EHDS.

Working groups

Sub-bodies and expert groups operating within larger standards organisations or infrastructures.

  • BIDS Steering Group is the community governance body for the BIDS specification and the BEP extension process.
  • EEG101 (COST Action CA24148) is a European network developing standardised reporting, harmonised datasets, and open-science infrastructure for EEG research.
  • ClinGen (Clinical Genome Resource) is an expert-panel consortium defining the clinical relevance of genes and variants, submitting curated classifications to ClinVar.
  • INCF working groups are community task forces that facilitate development of standards and best practices.
  • NWB Working Group is the community governance body for the NWB specification and NDX extensions.
  • OHDSI Clinical Trials Working Group develops conventions for converting CDISC SDTM data to OMOP CDM.
  • QUAREP-LiMi (Quality Assessment and Reproducibility for Instruments and Images in Light Microscopy) works toward ISO standards for light microscopy quality.