Factors Influencing the Generation of Evidence from Simple Data Held in International Rare Disease Patient Registries
Author:
Publisher
Springer Science and Business Media LLC
Subject
Pharmacology (medical),Pharmacology
Link
http://link.springer.com/content/pdf/10.1007/s40290-019-00316-w.pdf
Reference19 articles.
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2. Nguengang Wakap S, Lambert DM, Olry A, Rodwell C, Gueydan C, Lanneau V, et al. Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database. Eur J Hum Genet. https://doi.org/10.1038/s41431-019-0508-0. (epub 16 Sep 2019).
3. Jandhyala R. Comment on: “Patient registries: an underused resource for medicines evaluation: operational proposals for increasing the use of patient registries in regulatory assessments”. Drug Saf. 2019;42(12):1515–16.
4. Travers K, Sallum RH, Burns MD, Barr CE, Beattie MS, Pashos CL, et al. Characteristics and temporal trends in patient registries: focus on the life sciences industry, 1981–2012. Pharmacoepidemiol Drug Saf. 2015;24:389–98.
5. D’Agnolo HM, Kievit W, Andrade RJ, Karlsen TH, Wedemeyer H, Drenth JP. Creating an effective clinical registry for rare diseases. United Eur Gastroenterol J. 2016;4:333–8.
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