Provided by EUROPEAN PLATFORM ON RARE DISEASE REGISTRATION (EU RD PLATFORM)
The European Rare Disease Registry Infrastructure (ERDRI) renders rare disease registries’ data searchable and findable. This is achieved through the provision of following components: European Directory of Registries (ERDRI.dor), Central Metadata Repository (ERDRI.mdr) and Pseudonymisation Tool.
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The RD-Connect Registry & Biobank Finder is an online directory of existing rare disease databases, registries and biobanks.
The RD-Connect Registry & Biobank Finder lets researchers find the rare disease patient registries and biobanks that store data on their rare disease of interest. The system provides databases’ contact data and the numbers of registered cases for each disease in the registry/biobank, regularly updated by the database curators.
Users can search the directory by disease name and its synonyms, ORPHA- or OMIM-codes and other keywords, such as the country or registry manager. The system also provides access to documents such as databases’ study protocols, case report forms, informed consent templates and data access agreements.
Provided by European Network of Centres for Pharmacoepidemiology and Pharmacovigilance (ENCepp)
The HMA-EMA RWD Catalogues are repositories of metadata collected from real-world data (RWD) sources and RWD studies. They are intended to help regulators, pharmaceutical companies and researchers to identify and use such data when investigating the use, safety and effectiveness of medicines.
The Catalogue of RWD sources replaced the ENCePP Resources Database, while the Catalogue of RWD studies replaced the EU PAS Register®. Additionally, Catalogues of institutions and networks are also available to support the RWD sources and RWD studies Catalogues. Together, these Catalogues offer an improved and more efficient service for researchers, regulators, and pharmaceutical companies to:
Facilitate the discoverability of adequate data sources to generate real-world evidence for regulatory purposes (e.g., identification of RWD data sources suitable for investigating a specific research question);
Aid in the suitability assessment of data sources by providing clear and easy access to information from the study protocol and study report;
Improve interoperability between studies and data sources;
Improve transparency.
The TREAT-NMD Global Registry Network brings together independent neuromuscular diseases (NMD) patient registries from across the world. The federated network currently has 64 registry members (either NMD- or disease-specific), who, together are collecting data on approximately 80,00 NMD patients.
Working together allows registries to provide data on larger groups of patients, to share learning between registries, and benefit from efficiencies in centralised contracting etc. Importantly, registries retain ownership and control of their data.
TREAT-NMD coordinates this activity, and provides research communication support (e.g. to write abstracts, posters, and publications) and facilitates global registry data enquiries and projects (including statistical analysis, contracting and assurance provision).
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