EURORDIS conducts survey on rare disease registries

Rare Disease RegistriesRare Disease Patient Registries constitute key instruments for increasing knowledge on rare diseases, for supporting fundamental, clinical and epidemiological research, and for post-marketing surveillance of orphan drugs and of drugs used off-label. Furthermore and of great importance for patients and their families, they can be instrumental in supporting health and social services planning.

Given the importance of registries and within the perspective of creating a European Platform for Rare Disease Registries, EURORDIS is conducting an online survey to gather patients’ thoughts and expectations about this topic.

Patients, family members and patient representatives are invited to fill out the questionnaire by clicking on the link below. They are encouraged to forward this request to other members of their organisations in order to have a significant and meaningful representation of each disease.

Go to questionnaire

The questionnaire is also available in French, Italian, German, Spanish, PortugueseGreek, Czech, Romanian and Danish.

In accordance with good practice on such data collection, the answers will be anonymous, without it being possible to trace the identity or address of the participants.
The opinion of each patient is essential: the more numerous the answers the more the patients’ voice will be heard.

Have a look at the response counter!

This survey is 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.
Preliminary results of the EURORDIS survey will be presented at the “Rare Disease and Orphan Drug Registries” International Workshop on October 8-9, 2012, organised by EPIRARE at the Italian National Institute of Health in Rome.   

For more information, please contact:

Monica Ensini
Registries and Biobanks Senior Manager, EURORDIS


Page created: 02/10/2012
Page last updated: 22/08/2013
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases