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Developing methodology for the creation of clinical practice guidelines for rare diseases: A report from RARE-Bestpractices
- Source :
- Rare Diseases, Rare diseases (Online) 3 (2015): e1058463-1–e1058463-9. doi:10.1080/21675511.2015.1058463, info:cnr-pdr/source/autori:Menaka Pai1,2, Alfonso Iorio1, Joerg Meerpohl3, Domenica Taruscio4, Paola Laricchiuta4, Pierpaolo Mincarone5, Cristina Morciano4, Carlo Giacomo Leo6,7, Saverio Sabina8, Elie Akl8, Shaun Treweek9, Benjamin Djulbegovic10, and Holger Schunemann1,3 for the RARE-Bestpractices Consortiumy/titolo:Developing methodology for the creation of clinical practice guidelines for rare diseases: A report from RARE-Bestpractices/doi:10.1080%2F21675511.2015.1058463/rivista:Rare diseases (Online)/anno:2015/pagina_da:e1058463-1/pagina_a:e1058463-9/intervallo_pagine:e1058463-1–e1058463-9/volume:3
- Publication Year :
- 2015
- Publisher :
- Taylor & Francis, 2015.
-
Abstract
- Rare diseases are a global public health priority; they can cause significant morbidity and mortality, can gravely affect quality of life, and can confer a social and economic burden on families and communities. These conditions are, by their nature, encountered very infrequently by clinicians. Thus, clinical practice guidelines are potentially very helpful in supporting clinical decisions, health policy and resource allocation. The Grading of Recommendations Assessment, Development and Evaluation (GRADE) system is a structured and transparent approach to developing and presenting summaries of evidence, grading its quality, and then transparently interpreting the available evidence to make recommendations in health care. GRADE has been adopted widely. However, its use in creating guidelines for rare diseases - which are often plagued by a paucity of high quality evidence - has not yet been explored. RARE- Bestpractices is a project to create and populate a platform for sharing best practices for management of rare diseases. A major aim of this project is to ensure that European Union countries have the capacity to produce high quality clinical practice guidelines for rare diseases. On February 12, 2013 at the Istituto Superiore di Sanita, in Rome, Italy, the RARE-Bestpractices group held the first of a series of 2 workshops to discuss methodology for creating clinical practice guidelines, and explore issues specific to rare diseases. This paper summarizes key results of the first workshop, and explores how the current GRADE approach might (or might not) work for rare diseases. Avenues for future research are also identified.
- Subjects :
- medicine.medical_specialty
Best practice
030204 cardiovascular system & hematology
Meeting Report
computer.software_genre
03 medical and health sciences
0302 clinical medicine
access
Nursing
Health care
Medicine
030212 general & internal medicine
Grading (education)
Health policy
evaluation
business.industry
Public health
General Engineering
rare diseases
Evidence-based medicine
3. Good health
Critical appraisal
health care quality
Data mining
business
evidence-based medicine
computer
clinical practice guideline
Health care quality
Subjects
Details
- Language :
- English
- ISSN :
- 21675511
- Volume :
- 3
- Issue :
- 1
- Database :
- OpenAIRE
- Journal :
- Rare Diseases
- Accession number :
- edsair.doi.dedup.....a9496107f9d807ecc6c1f07bc02bb437