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RARE-Bestpractices is a project funded by the European Union Seventh Framework Programme (FP7/2007/2013) under grant agreement n° 305690. The project, coordinated by the Istituto Superiore di Sanità, will develop a sustainable networking platform, supporting the collection of standardized and validated data and efficient exchange of knowledge and reliable information on rare diseases (RD).   Working in collaboration with high level of experts in the areas of clinical practices guideline, systematic review, health technology assessment, health policy, rare disease epidemiology and public health, jamarau will be responsible for developing and supporting the projects IT platform.

The project includes 15 partners across Europe: Istituto Superiore di Sanità (IT), Jamarau (UK ), Karolinska Institutet (SE), Healthcare Improvement Scotland (UK), London School of Economics and Political Science (UK), Consiglio Nazionale delle Ricerche (IT), EURORDIS European Organisation for Rare Diseases (FR), Associazione per la Ricerca sull’Efficacia dell’Assistenza Sanitaria Centro Cochrane Italiano (IT), Universitaetsklinikum Freiburg (DE), Bulgarian Association for Promotion of Education and Science (BG ), Fundación Canaria de Investigación y Salud (ES), Universiteit Maastricht (NL), The European Academy of Paediatrics AISBL (BE), University of Newcastle Upon Tyne (UK), Istituto de Salud Carlos III (ES).

“The project RARE-Bestpractices intends to respond to the information needs of health professionals, patients, policy makers in the field of rare diseases, by creating a system of easily accessible resources for the development, evaluation, dissemination and implementation of guidelines for clinical practice” said Dr. Domenica Taruscio, project coordinator “A major challenge in the care of patients with rare diseases of yesterday and today, is, in fact, a full and continuous access to accurate and up to date information on the treatment options.”

The project aims to improve the clinical management of rare diseases by undertaking the following activities which carry significant implications for the timely translation of research results into practices. These are:

1)     create standards and transparent reliable procedures for the development and evaluation of clinical practice guidelines for rare diseases

2)     create an innovative methodology for representing processes included in clinical recommendations  in order to support their effective implementation  into practice  and to simplify auditing and economic evaluations

3)     build a comprehensive publicly searchable database of high quality clinical practice guidelines ranging from diagnostic tests and treatments to care organizations to help professionals, patients, policy makers with the best and most up to date information

4)     produce mechanisms to identify and prioritize rare diseases clinical research needs to optimize as well as redefine the clinical research agenda taking into consideration both patients’ and clinicians’ needs and interests.

Additional important activity will be the organization of courses intended to serve as an introduction to guidelines development process and evaluation, taking into account challenges in developing guidelines for rare diseases identified within the project.

To help shape its strategy and support its activities  RARE-Bestpractices  has set up an Advisory Board of  international experts representing European and extra-European organizations/agencies/ all  with strong commitment in basic, clinical research on rare diseases such as  National Institutes of Health – Office of Rare Diseases Research (NIH-ORDR) and public health. The Advisory Board is also composed of experts representing global networks e.g. the Guidelines International Network (G-I-N), which supports evidence-based health care, and Pan America Health Organization/World Health Organization (PAHO/WHO) a health agency working to improve health and living standards of the countries of the Americas.

The project, which commenced on 1 January 2013, will run for four years.  A formal ”kick-off” meeting will take place in Rome at the Istituto Superiore di Sanità (Italian National Institute of Health) from 11th to 12th  February 2013.

For more information, visit the RARE-Bestpractices website.

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