The objective of the Key2Rare project is to develop a Data Discovery Tool for Rare Disease Research that will facilitate researchers' access to clinical, genomic, and epidemiological information relevant to the study of rare diseases. This tool will consist of a platform that, through a federated architecture, allows researchers to locate, evaluate, and request access to clinical, genomic, or epidemiological datasets, while maintaining the sovereignty and confidentiality of the information in each organization's repositories.

The purpose of data discovery is to explore and find value in large volumes of data, which is crucial in the case of rare diseases due to the dispersion of data and their low prevalence, making them difficult to study. The secondary use of data in the European Health Data Area (EHDS) This represents a great opportunity for research into Rare Diseases.

The tool will integrate with local metadata catalogs, use IDS connectors and a metadata federator to streamline the search for relevant information, and offer a simplified access request flow, taking into account the legal requirements established by the GDPR and the EHDS.

This project has the financial support of the European Union through the Next Generation EU funds within the framework of the 2024 call for the granting of aid, in the field of digitalization, for the digital transformation of strategic productive sectors through the development of technological products and services for Data Spaces, of the State Secretariat for Digitalization and Artificial Intelligence (Ministry of Digital Transformation and Public Function).