RARE-Bestpractices The platform

RARE-Bestpractices The platform

Dedicated to rare diseases, the IT infrastructure will consist of a publicly available website, two database applications and a forum based Web Community.

The website, launched in 2013, provides the community with information about the project and related advancements.

Development of the databases and Web Community is also well advanced, with three prototypes scheduled for user testing in July.

The database records have been designed to capture important information about the guidelines and research recommendations and incorporated tools will be applied later this year (est. September) to support development of the RBP pilot guideline on catastrophic antiphospholipid syndrome. The finished platform will not only store and disseminate the collection of guidelines and research recommendations in a user friendly manner (as shown in the above snapshot), but also serve to enhance the efficiency of related processes.


Karen Ritchie, Michele Hilton Boon, Jan Manson, Ali McAllister and Jo Auld, Mick Hawkins

Healthcare Improvement Scotland and Jamarau Ltd

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