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.Visit website
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.
Pharmacoepidemiology and pharmacovigilance Resource Database
The Resource Database is an electronic index of available EU research organisations, networks and data sources, including patient registries, in the fields of pharmacoepidemiology and pharmacovigilance, and is a key component of the ENCePP web portal. All information contained in this database is provided and maintained by the listed organisations, data providers or registry holders.
The Resource Database includes information on expertise and research experience across Europe and serves as a hub for both researchers and study sponsors seeking to identify organisations and data sets for conducting specific pharmacoepidemiology and pharmacovigilance studies in Europe.
The database is fully searchable and allows the identification of research centres, data sources and patient registries by country, type and other relevant criteria.
TREAT-NMD can advise if a registry is available for a particular neuromuscular condition (contact email) and a list of registries by disease can be found here. The data in registries can be entered by patients themselves, by their doctor or by a combination of the two.
Identify participants for clinical trials
Help develop care standards, to help improve the care people receive
Support specific research questions
Provide information for doctors and scientists to learn more about neuromuscular diseases
Represent a link between patients and the research community, providing the opportunity for people to receive information directly relevant to their condition (for example, through newsletters)