Within the health sector, Soltel launches an innovative initiative for the development of a A data discovery platform that facilitates researchers' access to clinical, genomic, and epidemiological information relevant to the study of rare diseases.. 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).
The rare diseases They affect a small number of people, making it difficult to obtain sufficient data for their study and treatment. Relevant information is scattered across multiple repositories (hospitals, research centers, patient registries), which poses an obstacle to biomedical research and the development of effective treatments. Furthermore, access to this data is limited by regulatory barriers, a lack of interoperability, and complex permission management processes.
The goal of the project Key2Rare It consists of the development of a Data Discovery Tool for Rare Disease Research comprised of a platform that, through a federated architectureIt 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.
Once the request is approved, the researchers will access the data in a safe treatment environmentWith anonymization and traceability measures to ensure patient protection, the tool, designed to interoperate with MyHealth@EU and HealthData@EU, facilitates the aggregation of information at the European level, enhancing cross-border collaboration and accelerating the development of treatments, clinical trials, and studies of rare diseases.
Ultimately, this tool will allow researchers to access a wealth of health data relevant to their research, while ensuring the privacy and security of sensitive information. It will optimize collaboration among different stakeholders in the healthcare ecosystem, driving innovation in the health sector.
