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FAQ

Catalogue FReSH

A catalogue is a tool for referencing and documenting health studies and the datasets they produce. It facilitates:
  • Discovery of resources,
  • Information on their characteristics,
  • Knowledge of access conditions.
Research data are data produced or collected specifically to address a scientific question. They are part of a process of knowledge production, hypothesis validation or refutation, and understanding of studied phenomena. Research data are characterised by:
  • Diverse protocols, disciplines, and themes depending on the projects;
  • In-depth measurements (fine phenotyping, biological data, imaging, detailed questionnaires, etc.);
  • Study populations that are often restricted and targeted, not always representative of the general population;
  • Data quality controlled by predefined scientific protocols.
Health data are produced for the purpose of care or health system management. They are used for patient monitoring, medical care, or healthcare organisation management. These data are produced in large quantities, but their structure varies and is heterogeneous depending on the source (medical records, medico-administrative databases, hospital information systems). Research data are collected specifically to answer a scientific question: their nature, format, and granularity are determined in advance by the research protocol. Consequently, they reflect scientific choices. They are inseparable from their production context (protocol, studied population, collection conditions, etc.), and their interpretation requires rich metadata (methodology, instruments, etc.). Their quality is assessed not only based on technical criteria but also in relation to the scientific question posed.
The catalogue lists individual data produced in the context of human health research—whether observational studies, interventional studies, or humanities and social sciences research. It can therefore include data collected through clinical trials, cohorts, surveys, and registries.
Metadata is information that describes a dataset or a collection of data (e.g., population type, collected variables, collection period, access conditions, contact). Metadata does not allow the identification of an individual.
Some metadata may describe sensitive individual data, but they never contain identifying information. They are used solely to understand the nature of the data and their conditions of use.
No, the FReSH catalogue does not host data. It only provides descriptions of studies via their metadata (information describing the data, e.g., theme, studied population, access conditions).
Not directly. To access the data, you can contact the principal investigator, the referent indicated in the study record, or use the access request tool when available.
Not directly. FReSH catalogues studies that conduct primary data collection, some of which may also use SNDS data. However, the catalogue does not list SNDS databases.

European Health Data Space (EHDS)

The regulation establishing the European Health Data Space (EHDS) aims to create a common framework across the European Union for the use and exchange of health data. In the context of secondary use, the establishment of a common European space is intended to facilitate the secure reuse of health and research data for scientific research, innovation, and the development and evaluation of public policies. The regulation introduces new obligations for research stakeholders, including the requirement to make datasets identifiable and reusable under secure conditions.
Yes, documenting data in a public catalogue is a step towards compliance with the EHDS regulation requirements. This obligation aims to make it possible to identify which data exist, where they are located, and their quality level, ultimately promoting access to high-quality data. However, this requirement is being implemented progressively: the publication of implementing acts specifying the practical modalities of the regulation is expected in 2027. It is important to note that documentation does not imply access to the data, but it is essential to make their existence visible and facilitate their controlled reuse.
The EHDS regulation does not impose a single European catalogue but requires that data be documented in a catalogue that meets the visibility, structuring, and interoperability requirements set out in the regulatory framework. The choice of catalogue depends on the type of data involved. In France, coordination is established between various partner catalogues (healthcare institutions, research institutions, industrial stakeholders) and the Health Data Hub (HDH) metadata catalogue, which complies with the European format. The FReSH catalogue is designed to document data collected in the context of health research. Deployed by the research community, it enables a more detailed description of the study methodology and the data collection context to promote reuse. Thanks to cooperation between FReSH and the HDH, you do not need to separately fill out the description of your study in the HDH metadata catalogue. FReSH transmits the required descriptive information to comply with the EHDS.
The FReSH catalogue is a first step towards compliance, as it allows health research datasets to be documented in a structured and standardised manner. However, data documentation is only the first mandatory step. To fully meet the EHDS regulation requirements, it must be supplemented—depending on the research project framework—by the actual provision of data.

Contributing to the FReSH Catalogue

The research data description form can be completed by:
  • The principal investigator (PI),
  • A project team member,
  • Or an authorised person (data manager, project leader, etc.).
Yes, a validated record can be modified at any time. Updates are saved after a new validation.
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