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Título
RARE-Bestpractices: a platform for sharing best practices for the management of rare diseases
Autor(es)
Taruscio, D | Morciano, C | Laricchiuta, P | Mincarone, P | Palazzo, F | Leo, CG | Sabina, S | Guarino, R | Auld, J | Sejersen, T | Gavhed, D | Ritchie, K | Hilton-Boon, M | Manson, J | Kanavos, PG | Tordrup, D | Tzouma, V | Le Cam, Y | Senecat, J | Filippini, G | Minozzi, S | Del Giovane, C | Schünemann, H | Meerpohl, JJ | Prediger, B | Schell, L | Stefanov, R | Iskrov, G | Miteva-Katrandzhieva, T | Serrano-Aguilar, Pedro | Perestelo-Perez, L | Trujillo-Martín, MM | Pérez-Ramos, J | Rivero-Santana, A | Brand, A | van Kranen, H | Bushby, K | Atalaia, A | Ramet, J | Siderius, L | Posada De la Paz, Manuel ISCIII | Abaitua-Borda, Ignacio ISCIII | Alonso-Ferreira, Veronica ISCIII | Hens Pérez, Manuel ISCIII | Manzanares, FJ
Fecha de publicación
2014
Cita
Orphanet Journal of Rare Diseases 2014 9(Suppl 1):O14.
Idioma
Inglés
Tipo de documento
conference paper
Resumen
Rare diseases; clinical practice guidelines; recommendations. RARE-Bestpractices (http://www.rarebestpractices.eu) is a 4-year project (2013-2016) funded by the EC FP7. 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. Methods: RARE-Bestpractices (http://www.rarebestpractices.eu) involves 9 EU countries, including 15 partners from academic institutions, governmental bodies, patient organizations and networks, which will exploit the added value of integrating different contributions and viewpoints. The platform is developed involving both experts in RD research as well as experts in clinical practice guidelines (CPG) and systematic reviews. Results: 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 (http://rarejournal.org). Discussion: RARE-Bestpractices addresses the demands from both patients and health care providers for updated and high quality CPG on RD. The project will meet the requirements laid down by to the Directive 2011/24/EU, which endorses EU MS to develop European Reference Networks (ERNs) for RD; in fact, one main criterion for ERNs should be the competence to produce CPG and actively disseminate them among Centers of Expertise.
Palabras clave
Descripción
From 7th European Conference on Rare Diseases and Orphan Products (ECRD 2014).
Versión en línea
DOI
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