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P119 The Rare-Best practices Project: An Overview
  1. D Taruscio1,
  2. C Morciano1,
  3. P Laricchiuta1,
  4. G Vincenti1,
  5. L Agresta1,
  6. P Mincarone2,
  7. F Palazzo2,
  8. C Leo2,
  9. S Sabina2,
  10. R Guarino2,
  11. J Auld3,
  12. T Sejersen4
  1. 1Istituto Superiore di Sanità, Rome, Italy
  2. 2Consiglio Nazionale delle Ricerche, Rome, Italy
  3. 3Jamarau, London, UK
  4. 4Karolinska Institutet, Stockholm, Sweden


Background RARE-Best Practices is a 4-year project (2013-2016) funded by the EU FP7.

Objective Developing a sustainable networking platform, supporting an efficient exchange of reliable and up to date information on the management of rare diseases (RD) to improve patient health outcomes.

Methods RARE-Best Practices will reach its goals by promoting collaboration among partners with a strong track record in RD research as well as in clinical practice guidelines (CPG) and systematic review development from academic institutions, governmental bodies, patients organisations and networks.

Results Project expected outputs: 1) identification of challenges to be considered in deriving high quality standards for CPG on RD; 2) creation of transparent procedures and criteria for the evaluation and the collection of CPG on RD in a publicly searchable database; 3) identification of the available notations for graphic representation of processes within CPG to improve user understandability and implementation; 4) production of mechanisms to identify and prioritise RD clinical research needs to optimise the research agenda on RD; 5) development of training activities targeted to key stakeholders to disseminate process and tools for developing and evaluating CPG.

Discussion/Implication for Guidelines Developers Users RARE-Best Practices will address the patients and health care providers demand for updated and high quality CPG on RD. It intends also to respond to the Directive 2011/24/EU which encourages EU MS to the development of European Reference Networks in the area of RD which, among other criteria and conditions, ‘should have the capacity to produce good practice guidelines’.

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