Soltel has successfully completed the Key2Rare project, a technological solution for healthcare data spaces aimed at facilitating the location and analysis of information relevant to research on rare diseases.
The tool facilitates the location, evaluation, and request for access to clinical, genomic, and epidemiological datasets distributed among different organizations.
Rare diseases present significant challenges for biomedical research. Available information can be scattered across hospitals, research centers, patient registries, and other specialized sources, making it difficult to identify appropriate datasets and understand the necessary conditions for accessing them.
Key2Rare addresses this challenge through a federated approach, typical of data spaces, which allows users to query descriptive information on clinical, genomic, and epidemiological data from various repositories. This enables researchers to locate relevant information from a common access point, without initially needing to transfer the original data from the organizations that hold it.
The platform integrates with local metadata catalogs to provide a federated view of information available across different organizations. This streamlines the location of relevant datasets and facilitates a structured access request process, respecting the terms of use, privacy, and governance established by each entity.
La herramienta facilita la identificación de conjuntos de datos atendiendo a criterios como la enfermedad, las características de la población, el tipo de información disponible o las condiciones de acceso. Además, incorpora mecanismos para valorar la calidad y utilidad de los datos, ayudando a priorizar aquellos recursos que pueden resultar más adecuados para cada investigación.
From the search to knowledge
Key2Rare supports research teams through the main stages needed to identify and use relevant information about rare diseases.
Discover available information. The platform allows users to locate clinical, genomic, and epidemiological data distributed across different organizations. It does this by querying metadata catalogs and displaying descriptive information about available datasets, without requiring the initial transfer of the original data.
Evaluate its usefulness and request access. Researchers can learn about the general characteristics, quality, and access conditions applicable to each dataset. Based on this information, the tool facilitates a structured process for requesting access according to the criteria established by the entities responsible for the data.
Analyze under conditions of trust. When access is authorized, the analysis can be performed in controlled environments, applying privacy, traceability, and usage control measures. This facilitates the generation of research results while preserving the security of the information and respecting applicable access conditions.
The solution is designed to be progressively integrated with data space architectures and European initiatives related to the exchange and reuse of healthcare data. Its approach is based on principles of interoperability, data sovereignty, and responsible use of information.
Key2Rare also helps facilitate compliance with the legal and ethical requirements associated with accessing and processing health data through permission control, traceability, and auditing mechanisms. This ensures that requests and analyses are carried out under the conditions established by the data controllers and applicable regulations.
In this way, Key2Rare helps strengthen collaboration among researchers, healthcare organizations, research centers, and other entities linked to the health data ecosystem. By facilitating the identification of distributed information and reducing the barriers associated with its location and access, the tool promotes knowledge generation in the field of rare diseases.
The project represents a step towards a more connected, secure and research-oriented health data ecosystem, fostering the development of new opportunities for collaboration in the study of rare diseases.
Following the completion of the project, a new stage begins focused on consolidating the results achieved, maintaining the evolution of the solution, and exploring opportunities for application and collaboration within the rare disease research ecosystem.
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).
