Glossary

Information collected during the course of treatment, necessary for the assessment and care of the patient.

A reasoned and standardised lexicon facilitating documentary research and comparative data analysis (list of keywords, glossary, thesaurus, taxonomy, ontology).

A collection of data sets and information organised so that it can be easily accessed, managed and updated.

Aggregation of raw or derived data presenting a certain ‘unity’, gathered together to form a coherent whole.

Activities that involves cleaning, editing and transforming data with the aim of obtaining ‘clean’ data sets that are readable and easier to process.

All stages of research data management, from creation to archiving, aimed at making data FAIR throughout its lifecycle.

A clear and detailed description of all the information accompanying a dataset, enabling an understanding of its origin, production context, content, structure, collection methods and conditions of use.

Enables the unique identification of a physical or digital object and its citation. It provides a stable link to online resources, such as research data.

A set of guiding principles for managing research data, aimed at making them easy to find, accessible, interoperable and reusable by humans and machines.

Process of copying data sets and their metadata from multiple web sources and storing them in a structured format.

Personal data concerning health are data relating to the past, present or future physical or mental health of a natural person (including the provision of healthcare services) which reveal information about that person's health status.

Personal, social, economic and environmental factors that determine the health status of individuals or populations.

A scientific project that complies with methodological and ethical standards and best practices, which collects personal health data in order to answer a medical, paramedical or health-related question.

Individual or personal data : All information collected for a single individual in a study. Within the European Union, the processing of personal data is governed by the General Data Protection Regulation (GDPR).

The ability of two or more systems to exchange data and use each other's information without requiring significant effort on the part of users or developers to integrate and use them.

Research in which investigators carry out an intentional action or change in a target group (e.g., medical treatment, prevention programme, organisational change, educational or social action) with the aim of evaluating its effects on health, behaviours, or health-related practices.

Structured set of data used to define or describe a resource in order to facilitate its search, use and management.

A standard is a schema that has been adopted as a model by a group of users: it is recognised, standardised and widely used. To populate it, it is recommended to use dedicated vocabularies (thesauruses, lexicons, taxonomies, etc.).

Research in which investigators do not actively intervene in the participants or the context being studied, but observe, describe and analyse existing situations. It may involve data from routine care, surveys, registries, observations of behaviour or environments, without introducing any deliberate changes to reality.

Data that an organisation makes available to everyone in the form of digital files so that it can be reused. Open data is not usually personal in nature. It is accessible in a format that facilitates its reuse. The reuse of data may be subject to conditions.

Unrestricted dissemination of scientific research results, methods and products. It builds on the opportunity presented by the digital transformation to develop open access to publications and, as far as possible, to data, source codes and research methods.

A string of alphanumeric characters that identifies a resource regardless of its location and guarantees a stable link to the online resource by permanently matching the identity of the resource to its location on the web.

An healthcare provider collects data firsthand about a patient in order to provide care.

A research practice that makes all information related to scientific work available, including, but not limited to, text, data and programming code, so that any independent researcher can reproduce the results.

Factual records (figures, texts, images and sounds) that are used as primary sources for scientific research and are recognised by the scientific community as necessary for the validation of results.

The act of analysing data produced, formatted and made available by others for a purpose other than that for which it was originally intended.

Reusing existing data that was collected during primary use for scientific research purposes, public interest, policy support.