Award for Best Oral Presentation by a First Timer - Hunting zebra: retrieving rare disease guidelines
Abstract
The EAHIL 2014 conference provided the opportunity to present a piece of work carried out by a team of informationprofessionals for RARE-Bestpractices (RBP), an international project to promote exchange of information andknowledge in rare disease. The authors work for Healthcare Improvement Scotland (HIS), a publicly fundedorganisation which uses evidence, scrutiny and improvement science to facilitate the delivery of safe, effective andpatient-centred healthcare. HIS is one of fifteen European partners contributing to RBP with our team providing thecore information professional support for the project. Work to develop a rare disease guideline search protocol waspresented in order to raise awareness of RARE-Bestpractices, and to demonstrate the engagement of informationprofessionals in multidisciplinary research projects.
References
1. Sotos J. Zebra Cards. [cited 2014 Jul 30]; Available from: http://www.zebracards.com/a-intro_inventor.html.
2. European Union. Council recommendation on an action in the field of rare diseases (2009/C 151/02). [cited 2014 Jul 30];
Available from: http://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=OJ:C:2009:151:0007:0010:EN:PDF.
3. Orphanet. Prevalence of rare diseases: bibliographic data. [cited 2014 Jul 30]; Available from:
http://www.orpha.net/orphacom/cahiers/docs/GB/Prevalence_of_rare_diseases_by_decreasing_prevalence_or_cases.pdf.
4. Hilton Boon M, Ritchie K, Manson J. Improving the retrieval and dissemination of rare disease guidelines and research recommendations: a RARE-Bestpractices initiative. Rare Diseases and Orphan Drugs. 2014 [cited 2014 30 Jul]; 1(1). Available from: http://rarejournal.org/rarejournal/article/view/33.
5. Rare Diseases and Orphan Drugs: an International Journal of Public Health. [cited 2014 Jul 30]; Available from: http://rarejournal.org/rarejournal.
2. European Union. Council recommendation on an action in the field of rare diseases (2009/C 151/02). [cited 2014 Jul 30];
Available from: http://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=OJ:C:2009:151:0007:0010:EN:PDF.
3. Orphanet. Prevalence of rare diseases: bibliographic data. [cited 2014 Jul 30]; Available from:
http://www.orpha.net/orphacom/cahiers/docs/GB/Prevalence_of_rare_diseases_by_decreasing_prevalence_or_cases.pdf.
4. Hilton Boon M, Ritchie K, Manson J. Improving the retrieval and dissemination of rare disease guidelines and research recommendations: a RARE-Bestpractices initiative. Rare Diseases and Orphan Drugs. 2014 [cited 2014 30 Jul]; 1(1). Available from: http://rarejournal.org/rarejournal/article/view/33.
5. Rare Diseases and Orphan Drugs: an International Journal of Public Health. [cited 2014 Jul 30]; Available from: http://rarejournal.org/rarejournal.
Published
2017-01-12
How to Cite
1.
Manson J, Boon M, Ritchie K. Award for Best Oral Presentation by a First Timer - Hunting zebra: retrieving rare disease guidelines. JEAHIL [Internet]. 12Jan.2017 [cited 26Apr.2024];10(3). Available from: http://ojs.eahil.eu/ojs/index.php/JEAHIL/article/view/182
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Section
Feature Articles
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