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Methodology for production of best practice guidelines for rare diseases (Articolo in rivista)

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Methodology for production of best practice guidelines for rare diseases (Articolo in rivista) (literal)

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Thomas Sejersen1, Cinzia Del Giovane2, Graziella Filippini2, Carlo Giacomo Leo3, Joerg J Meerpohl4, Pierpaolo Mincarone5, Silvia Minozzi2, Saverio Sabina3, Holger Schünemann4, 6, Juliette Senecat7, Domenica Taruscio8 and the RARE-Bestpractices consortium9 (2014)
Methodology for production of best practice guidelines for rare diseases
in Rare diseases and orphan drugs (Online)
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Thomas Sejersen1, Cinzia Del Giovane2, Graziella Filippini2, Carlo Giacomo Leo3, Joerg J Meerpohl4, Pierpaolo Mincarone5, Silvia Minozzi2, Saverio Sabina3, Holger Schünemann4, 6, Juliette Senecat7, Domenica Taruscio8 and the RARE-Bestpractices consortium9 (literal)

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1 Karolinska Institutet, Stockholm, Sweden; 2 Associazione per la Ricerca sulla Efficacia della Assistenza Sanitaria - Centro Cochrane Italiano, Italy; 3 National Research Council, Institute of Clinical Physiology - Unit of Health Technology Assessment, Epidemiology and Communication, Lecce, Italy; 4 German Cochrane Centre, Department of Medical Biometry and Medical Informatics, University Medical Center Freiburg, Ger- many; 5 National Research Council, Institute for Research on Population and Social Policies, Rome, Italy; 6 Department of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, Canada; 7 EURORDIS, European Organisation for Rare Diseases, Paris, France; 8 National Center for Rare Diseases, Istituto Superiore di Sanità, Rome, Italy; (literal)

Titolo

Methodology for production of best practice guidelines for rare diseases (literal)

Abstract

Best practice guidelines for clinical management have increasingly become useful tools for patients and health care professionals in several disease areas. This is the case not least in the area of rare diseases, where scarcity of expertise is a well known and far too common cause of late or wrong diagnosis and care. However, in order for clinical guidelines to be useful and trustworthy, they must adhere to principles of how they are developed and updated, including a basis of best available evidence. Because of the potential great importance of well made best practice guidelines for rare diseases, we here describe work within the RARE-bestpractices EU project aim to address this topic by i) delineate the current state of existing best practice guidelines, as well as processes and tools for developing, updating, and adapting guidelines in the field of rare diseases, ii) define and agree on methodological quality standards for best practice guidelines on rare diseases, iii) develop pilot best practice guidelines for a specific rare condition, implementing the agreed methodological quality standards and iv) to develop a graphical representation of the sequence of activities in best practice guidelines, which are useful for helping in understanding key steps, for allowing a faster development of information systems supporting the enactment of the modeled process, and for monitoring the effectiveness, efficiency and equity of the implemented guidelines. (literal)

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