RARE-Bestpractices: a platform for sharing best practices for the management of rare diseases

Abstract: 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

Object Details

• Location: Deutsche Nationalbibliothek Frankfurt am Main
• Extent: Online-Ressource
• Language: Englisch
• Notes: Orphanet journal of rare diseases. - 9, Suppl 1 (2014) , O14, ISSN: 1750-1172

Contributors, Places and Time

• Event: Veröffentlichung
• (where): Freiburg
• (who): Universität
• (when): 2019
• Creator: Taruscio, Domenica ; Schünemann, Holger J. ; Meerpohl, Jörg J. ; Prediger, B. ; Schell, Lisa ; Manzanares, Francis Jeanine
• Contributor: Institut für Medizinische Biometrie und Statistik. Freiburg im Breisgau ; Cochrane Deutschland

Further information

• DOI: 10.1186/1750-1172-9-s1-o14
• URN: urn:nbn:de:bsz:25-freidok-1178558
• Rights: Kein Open Access; Der Zugriff auf das Objekt ist unbeschränkt möglich.
• Last update: 25.03.2025, 1:54 PM CET