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Governance, Infrastructure and Frameworks

This index covers entities whose primary activity is governing, standardising, regulating, or providing shared infrastructure for research: policy bodies, national and European research infrastructures, legal frameworks, standards consortia, shared infrastructure initiatives, and working groups. Entities whose primary role is conducting or funding research belong in Actors.

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.
  • Barometre Science Ouverte (French Open Science Monitor) tracks open-access rates and FAIR Principles data compliance across French publicly funded research.
  • 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 all publicly funded research.
  • CoSO (Comité pour la Science Ouverte) coordinates the implementation of Ouvrir la Science across French research organisations.
  • CoARA (Coalition for Advancing Research Assessment) is the European institutional reform agreement signed in 2022 committing signatories 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.
  • EC Open Science Policy sets Horizon Europe open-access mandates and Plan S requirements, and provides the policy foundation for EOSC and EHDS.
  • GFRN (Global Federation of Reproducibility Networks) is the international umbrella for national reproducibility networks, including the French RFRR.
  • Open Science NL is the Dutch national open science programme (regieorgaan within NWO), established in 2023 to accelerate the transition to open science in the Netherlands.
  • Inserm Open Science is the Inserm institutional open science policy.
  • NIH Open Science Policy is the NIH Data Management and Sharing Policy (effective 2023), requiring data management plans and open data deposit for all NIH-funded research.
  • Ouvrir la Science is the French national open science plan covering publications, research data, software, and researcher training.
  • UNESCO Open Science Recommendation is the 2021 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.

  • ARDC (Australian Research Data Commons) is Australia’s national FAIR and RDM infrastructure and an active RDA partner.
  • BBMRI-ERIC is the European biobanking infrastructure, providing a federated catalogue of biobanks and an access negotiation platform.
  • CONP (Canadian Open Neuroscience Platform) provides a federated BIDS data portal using DataLad for version control and reproducibility.
  • EATRIS is the European translational medicine infrastructure focused on biomarker development and clinical trial support.
  • ECRIN supports multinational academic clinical trials through national partner networks.
  • F-CRIN (French Clinical Research Infrastructure Network) is the French national partner of ECRIN, federating the CIC network and DRCIs across French university hospital groups.
  • ELIXIR is the European life science data infrastructure with 23 national nodes. The French node is IFB.
  • EMBL (European Molecular Biology Laboratory) is an intergovernmental organisation whose EMBL-EBI branch operates EGA, EVA, IDR, ENA, and BioImage Archive, and serves as the hub of ELIXIR.
  • EOSC provides federated open science services and infrastructure for EU-funded research.
  • ESFRI is the EU advisory body that produced the ESFRI Roadmap and developed the ERIC legal framework underpinning ELIXIR, BBMRI-ERIC, EATRIS, ECRIN, and Euro-BioImaging.
  • Euro-BioImaging is the European bioimaging infrastructure. The French national node is France BioImaging.
  • France BioImaging is the French national cellular imaging infrastructure and the French node of Euro-BioImaging.
  • France Génomique is the French national genomics sequencing infrastructure, federating major sequencing platforms under the INBS umbrella.
  • France Life Imaging is the French national in vivo imaging infrastructure, with CATI as its neuroimaging data management node.
  • Huma-Num is the French national digital humanities and social sciences infrastructure, operating DARIAH and CLARIN French nodes.
  • IBiSA is the GIS that labels and funds technological platforms and biological resource centres in biology, health, and agronomy.
  • IFB (Institut Français de Bioinformatique) is the French national bioinformatics infrastructure and the French node of ELIXIR (ELIXIR-FR).
  • INBS is the umbrella coordinating all French national biology and health infrastructures, including France BioImaging, France Life Imaging, IFB, and the BIOBANQUES biobank network.
  • MUDIS4LS is an IFB-coordinated project building FAIR digital infrastructure for French life sciences.
  • NeurATRIS is the French national translational neuroscience infrastructure and the French node of EATRIS.

Health data and regulation

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

  • ANS (Agence du Numérique en Santé) is the French health IT standardisation agency. It manages the French SNOMED CT national release and publishes French HL7 FHIR implementation guides.
  • AP-HP (Assistance Publique Hôpitaux de Paris) operates the EDS AP-HP clinical data warehouse based on OMOP CDM.
  • CNIL is the French independent data protection authority, issuing authorisations and reference methodologies for health and genomic research data.
  • Code de la Sante 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 and has been in force since March 2025.
  • GDPR (General Data Protection Regulation, EU 2016/679) is the foundational EU legal framework governing personal data processing, with health data and genetic data designated as special categories requiring additional safeguards under Article 9.
  • ORAD (Organisme Responsable de l’Accès aux Données de Santé) is the French national health data access body to be designated under EHDS, with the Health Data Hub as the 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 in healthcare settings.

Data standards and reproducibility

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

  • FAIR Principles are the 15 Findable, Accessible, Interoperable, and Reusable principles published by Wilkinson et al. in 2016.
  • GA4GH (Global Alliance for Genomics and Health) governs VCF, VRS, Phenopackets, SAM-BAM-CRAM, and other genomic data sharing standards.
  • INCF (International Neuroinformatics Coordinating Facility) coordinates and facilitates open neuroscience standards, endorsing BIDS, NWB, HED, NIDM, NeuroML, Neo, and SWC. Its own products include Neurostars and the INCF TrainingSpace.
  • OBO Foundry is the governing consortium for interoperable biomedical ontologies including GO, HPO, UBERON, MONDO, ORDO, OBI, and Cell Ontology.
  • OHDSI maintains OMOP CDM and provides the ATLAS, ACHILLES, and HADES analytical tools across a global observational health data network.
  • OME (Open Microscopy Environment) produces OME File Formats, Bio-Formats, and OMERO, underpinning the data infrastructure of Euro-BioImaging and France BioImaging.
  • RDA (Research Data Alliance) produces the FAIR Data Maturity Model and coordinates over 120 working groups on open research data.
  • ReproducibiliTea is a grassroots journal club initiative for open and reproducible research, founded at the University of Oxford in 2018 and now active at over 120 institutions across more than 25 countries.
  • ReproNim develops shared reproducibility infrastructure including NIDM, ReproIn, and DataLad, funded by NIH.
  • The Turing Way is a community-led open handbook covering reproducible research, project design, collaboration, and research ethics, originally developed at the Alan Turing Institute.

Research alliances and funding frameworks

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

  • CURE-ND is the alliance for neurodegenerative disease research linking DZNE, Paris Brain Institute, Mission Lucidity, and UK DRI.
  • ABDN (African Brain Data Network) is a network of researchers and stakeholders across more than 20 African countries, building FAIR data capacity for African neuroimaging, supported by the Kavli Foundation.
  • ALBA Network is a global initiative promoting equity, diversity, and inclusion in the brain sciences, operating as a division of FENS with IBRO and SfN as co-founding partners.
  • BRIDGE (Brain Research International Data Governance & Exchange) is a Wellcome Trust-funded initiative hosted by INCF, building an International Data Governance Framework to enable responsible cross-border sharing of brain and mental health data.
  • Human Brain Project was the EU Horizon Flagship initiative (2013–2023) that created EBRAINS, the Julich Brain Atlas, and openMINDS.
  • IRDIRC (International Rare Diseases Research Consortium) is the international consortium of funders and research organisations coordinating global rare disease research and data sharing standards.
  • JPND (Joint Programme Neurodegenerative Disease Research) is the main European transnational funding framework for neurodegeneration.
  • TransCelerate is a pharmaceutical industry consortium promoting CDISC standards and clinical trial data sharing.
  • YODA Project (Yale Open Data Access) is an independent third-party platform for clinical trial data sharing.

Working groups

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

  • BIDS Steering Group is the independent community governance body for the BIDS specification and the BEP extension process, endorsed by INCF.
  • EEG101 (COST Action CA24148) is a European network launched in 2025 to develop standardised reporting, harmonised datasets, and open-science infrastructure for EEG research, with Working Group 3 led by the Paris Brain Institute.
  • ClinGen (Clinical Genome Resource) is an NIH NHGRI-funded programme defining the clinical relevance of genes and variants through expert panel curation, submitting curated classifications to ClinVar.
  • GT-GeDeM is the RTmfm and CNRS working group on microscopy data management.
  • INCF working groups are community task forces that facilitate development of standards and best practices.
  • NWB Working Group is the independent community governance body for the NWB specification and NDX extensions, endorsed by INCF.
  • OHDSI Clinical Trials Working Group is developing conventions for converting CDISC SDTM data to OMOP CDM.
  • QUAREP-LiMi is the Quality Assessment and Reproducibility initiative for light microscopy, with 590+ members working toward ISO standards.
  • RTmfm is the CNRS thematic network for functional multi-scale microscopy and the parent body of GT-GeDeM.