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oai:repisalud.isciii.es:20.500.12105/47992025-06-18T06:37:27Zcom_20.500.12105_2052com_20.500.12105_2051col_20.500.12105_19616
Repisalud author Taruscio, Domenica author Mollo, Emanuela author Gainotti, Sabina author Posada De la Paz, Manuel author Bianchi, Fabrizio author Vittozzi, Luciano funder Unión Europea. Comisión Europea 2017-09-04T16:26:17Z 2017-09-04T16:26:17Z 2014-10-13 Arch Public Health. 2014 Oct 13;72(1):35. 10.1186/2049-3258-72-35 2049-3258 Archives of Public Health 25352985 http://hdl.handle.net/20.500.12105/4799 BACKGROUND: The European Union acknowledges the relevance of registries as key instruments for developing rare disease (RD) clinical research, improving patient care and health service (HS) planning and funded the EPIRARE project to improve standardization and data comparability among patient registries and to support new registries and data collections. METHODS: A reference list of patient registry-based indicators has been prepared building on the work of previous EU projects and on the platform stakeholders' information needs resulting from the EPIRARE surveys and consultations. The variables necessary to compute these indicators have been analysed for their scope and use and then organized in data domains. RESULTS: The reference indicators span from disease surveillance, to socio-economic burden, HS monitoring, research and product development, policy equity and effectiveness. The variables necessary to compute these reference indicators have been selected and, with the exception of more sophisticated indicators for research and clinical care quality, they can be collected as data elements common (CDE) to all rare diseases. They have been organized in data domains characterized by their contents and main goal and a limited set of mandatory data elements has been defined, which allows case notification independently of the physician or the health service. CONCLUSIONS: The definition of a set of CDE for the European platform for RD patient registration is the first step in the promotion of the use of common tools for the collection of comparable data. The proposed organization of the CDE contributes to the completeness of case ascertainment, with the possible involvement of patients and patient associations in the registration process. eng Registries Common data elements European platform Rare diseases Patient registration EPIRARE The EPIRARE proposal of a set of indicators and common data elements for the European platform for rare disease registration research article URL https://repisalud.isciii.es/bitstreams/2ecd21d7-d392-4441-9c7c-6416d4b98a91/download File MD5 deebdbf9eb65a8b15c1737e61f9279a8 274330 application/pdf TheEPIRAREProposalOf_2014.pdf URL https://repisalud.isciii.es/bitstreams/f837b0e3-e035-4323-b4a9-d159779b371f/download File MD5 c663557e11550d91568052cebb291992 31066 text/plain 13690_2014_Article_5051.pdf.txt URL https://repisalud.isciii.es/bitstreams/5c4511a0-d88e-47ee-a757-621a49747b2e/download File MD5 c663557e11550d91568052cebb291992 31066 text/plain TheEPIRAREProposalOf_2014.pdf.txt URL https://repisalud.isciii.es/bitstreams/9871177f-8605-4009-913f-7f90f0e421af/download File MD5 e82a989f5619adca6892a0af6af57d1f 31030 text/plain TheEPIRAREProposalOf_2014.pdf.txt