Over 30 million Europeans live with a rare disease. Their clinical data are fragmented across hundreds of registries in Europe. Diagnoses and treatment possibilities for rare disease patients improve when their health data are shared, or pooled. But how can we share such data without revealing patients’ personal data and compromising their identity?
To solve this problem, the JRC has developed a new pseudonymisation system that is now available in the European Platform on Rare Disease Registration.
Giving a pseudonym to a patient allows working with the patient’s data without revealing their identity at any point. In fact, this is the only safe way to exchange, share and transfer patient data for all types of studies (clinical, epidemiological, translational, pharmacological, etc.) and research, without revealing the patients’ identities.
This new system, called SPIDER (Secure Privacy-preserving Identity management in Distributed Environments for Research), has been developed to preserve the privacy rights of patients, in line with existing General Data Protection Regulation legislation. It will enable the pseudonymisation of rare disease patients’ data in local, regional and national rare disease registries all across Europe.
SPIDER will essentially help researchers, healthcare providers, patients’ organisations and industry to carry out studies and research to improve diagnosis and treatment for rare disease patients. In addition to the pseudonymisation, SPIDER allows combining encrypted information about the same patient (data linkage) and encrypted pseudonymised data transfer functionalities across different data sources, even when the patient’s identity is unknown.
The European Platform on Rare Diseases Registration
The JRC in collaboration with Directorate-General for Health and Food Safety (DG SANTE) developed the European Platform on Rare Diseases Registration (EU RD Platform), which has been operational since 2019. The platform marks a significant milestone towards making rare diseases patient data searchable and findable. It makes patient data available for the community of researchers, healthcare professionals, patients and policymakers who are trying to tackle rare diseases.
The creation of the platform was essential since data on rare diseases is enormously fragmented across several hundred registries in Europe and, in practice, often not findable.
Today, the EU RD Platform sets EU-wide standards for data collection and exchange, and its infrastructure is openly accessible. The JRC, who manages the platform, provides training for people working in existing registries or interested in creating new registries. The platform is therefore crucial for quality research to improve diagnosis and treatment outcomes, finally giving a brighter outlook to long-suffering patients of rare disease as well as their families.
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- 20 May 2022
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