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The EURORDIS patient survey on rare disease registries has encountered a big success. The preliminary results are out!

December 2012

EURORDIS’ registries survey

EURORDIS is conducting a survey amongst patients and patient representatives on rare disease registries in order to gather their perspective and expectations on this important topic. 

The questionnaire used for this survey is composed of 14 questions covering issues, such as: aims of a registry, type of information collected, users of the registry, access to data, governance and financial sustainability. It is currently available online in EnglishFrench, Italian, German, Spanish, PortugueseGreek, Czech, RomanianDanish and Hungarian.

As of December 2012, EURORDIS has received 3500 responses from all over Europe representing hundreds of different rare diseases.  Although the survey is not closed yet, the preliminary results indicate that the vast majority of patients agree that the European Commission should propose legislation to uniformly regulate rare disease registries across Europe. There is a strong convergence of opinions towards the creation of a common reference platform for all rare disease registries in Europe.  In addition, an overwhelming majority expects the European Commission and public national authorities to secure the financial long-term sustainability of rare disease registries. Almost all of those who responded agree that registries should be instrumental to plan for healthcare and social services and that patients should have access to the data generated by registries and be strongly involved in their governance.

The EURORDIS patient survey is being conducted in parallel with another survey on registries managed by the Italian Health Institute (ISS), which targets registry holders, mainly belonging to academia. This latest survey is more extensive and complementary to the EURORDIS patient survey, in that it seeks to describe the reality of the registries landscape in Europe.

Comparing the two surveys, the preliminary results are striking: registries’ main objective, as they stand today, is to advance medical research, whilst patients are more concerned about the utility of registries to plan for healthcare and social planning.  However, understanding the natural history of the disease, as well as epidemiological and clinical research, remain important for patients and are ranked within the top 5 priorities.

Both surveys conducted as part of European Platform for Rare Disease Registries project (EPIRARE). A three-year project co-founded by the European Commission’s DG Health and Consumers within the EU Program of Community Action in the field of Public Health.

For more information, please contact:

Monica Ensini, Registries and Biobanks Senior Manager, EURORDIS
More information on the European Commission support to rare diseases registries and the creation of a European Platform on Rare Diseases Registration, here