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Abstract
Over the last decade the European Union has been coordinating actions addressing various aspects of rare diseases and has funded several cross-border research projects. Recently has initiated the biggest rare disease international collaborative effort by launching the International Rare Diseases Research Consortium (IRDiRC). RARE-Bestpractices is one of the more than 100 collaborative research projects on rare diseases funded under the Seventh Framework Programme for Research and Technological Development (FP7; 2007-2013) (1). As a wide, open and inclusive network, RARE-Bestpractices will build on the knowledge of the experts in rare disease research area and experts in guideline development and health technology assessment area, brought together, for the first time, from academic institutions, agencies, organizations, patient advocacy groups, governmental bodies. The project aims at building a platform to collect and exchange information on best practices for the management of rare diseases; to identify relevant research needs; to promote the development of high quality guidelines; and to contribute in making patients, health professionals and policy makers “informed guideline users”. Besides, RARE-Bestpractices will intend to define the extent to which conclusions from cost-effectiveness analyses for pharmaceuticals are accounted for and implemented in guidelines across a range of countries.
Highlights
The project aims at improving clinical management of patients with rare diseases (RD) and at narrowing the existing gap in quality of healthcare among countries
The platform is developed involving both experts in RD research as well as experts in clinical practice guidelines (CPG) and systematic reviews
Project expected outputs include: 1) identification of challenges to be considered in deriving high quality standards for CPG on RD; 2) transparent procedures and criteria for the evaluation of CPG and their collection in a publicly searchable database; 3) identification of notation criteria to improve user understandability and implementation of CPG; 4) production of mechanisms to assess RD clinical research needs; 5) development of training activities targeted to key stakeholders to disseminate process and tools for developing and evaluating CPG; 6) the publication of a new scientific journal
Summary
RARE-Bestpractices: a platform for sharing best practices for the management of rare diseases. D Taruscio1*, C Morciano, P Laricchiuta, P Mincarone, F Palazzo, CG Leo, S Sabina, R Guarino, J Auld, T Sejersen, D Gavhed, K Ritchie, M Hilton-Boon, J Manson, PG Kanavos, D Tordrup, V Tzouma, Y Le Cam, J Senecat, G Filippini, S Minozzi, C Del Giovane, H Schünemann, JJ Meerpohl, B Prediger, L Schell, R Stefanov, G Iskrov, T Miteva-Katrandzhieva, P Serrano-Aguilar, L Perestelo-Perez, MM Trujillo-Martín, J Pérez-Ramos, A Rivero-Santana, A Brand, H van Kranen, K Bushby, A Atalaia, J Ramet, L Siderius, M Posada, I Abaitua-Borda, V Alonso Ferreira, M Hens-Pérez, FJ Manzanares. The project aims at improving clinical management of patients with rare diseases (RD) and at narrowing the existing gap in quality of healthcare among countries
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