The EPIRARE proposal of a set of indicators and common data elements for the European platform for rare disease registration.

ABSTRACT:

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 surveilla

SUBMITTER: Taruscio D 

PROVIDER: S-EPMC4210567 | biostudies-literature | 2014

REPOSITORIES: biostudies-literature