A systematic literature review of evidence-based clinical practice for rare diseases: what are the perceived and real barriers for improving the evidence and how can they be overcome?

Author:

Rath Ana,Salamon Valérie,Peixoto Sandra,Hivert Virginie,Laville Martine,Segrestin Berenice,Neugebauer Edmund A. M.,Eikermann Michaela,Bertele Vittorio,Garattini Silvio,Wetterslev Jørn,Banzi Rita,Jakobsen Janus C.,Djurisic SnezanaORCID,Kubiak Christine,Demotes-Mainard Jacques,Gluud Christian

Funder

European Commission

Publisher

Springer Science and Business Media LLC

Subject

Pharmacology (medical),Medicine (miscellaneous)

Reference98 articles.

1. Garattini S, Jakobsen JC, Wetterslev J, Bertele V, Banzi R, Rath A, et al. Evidence-based clinical practice: overview of threats to the validity of evidence and how to minimise them. Eur J Intern Med. 2016;32:13–21. Epub 11 May 2016.

2. Regulation (EC) No 141/2000 of The European Parliament and of The Council of 16 December 1999 on orphan medicinal products. 2000. [cited 2017 November 14]; Available from: http://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=OJ:L:2000:018:0001:0005:en:PDF .

3. Song P, Gao J, Inagaki Y, Kokudo N, Tang W. Rare diseases, orphan drugs, and their regulation in Asia: current status and future perspectives. Intractable Rare Dis Res. 2012;1(1):3–9. Epub 1 Feb 2012.

4. National Institute of Health. Public Law 107–280 107th Congress. Rare Diseases Act. 2002. [cited 2017 November 14]; Available from:  https://history.nih.gov/research/downloads/PL107-280.pdf .

5. Rath AM, Nguengang Wakap S. Orphanet Report Series - Prevalence of rare diseases: Bibliographic data, Number 1. 2017. [cited 2017 November 14]; Available from: http://www.orpha.net/orphacom/cahiers/docs/GB/Prevalence_of_rare_diseases_by_alphabetical_list.pdf .

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