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- Title
Challenges for Synthesising Data in a Network of Registries for Systemic Psoriasis Therapies.
- Authors
Ormerod, A.D.; Augustin, M.; Baker, C.; Chosidow, O.; Cohen, A.D.; Dam, T.N.; Garcia-Doval, I.; Lecluse, L.L.; Schmitt-Egenolf, M.; Spuls, P.I.; Watson, K.D.; Naldi, L.
- Abstract
Background: Large disease registries are the preferred method to assess long-term treatment safety. If psoriasis registries collaborate in a network, their power to assess safety is increased. Objective: To identify heterogeneity in psoriasis registries and methodological challenges for synthesising the data they provide. Methods: We surveyed the registries in PSONET and identified and addressed the challenges to collaborative analysis for the network in several round table meetings. Results: Eight out of 10 registries had a prospective comparator cohort with similar disease characteristics but not on biologics. Registries differed in the coding and validation or follow-up of adverse events and in the way they sampled their population. Fifteen challenges to registries collaborating were identified in the areas of operational governance, structural conduct, bias and analysis. Conclusions: Participation in PSONET, a network of psoriasis registries, helps identify and solve common issues, enhancing the individual registries, and provides larger sets of more powerful safety data in a diverse population. Challenges to interpreting data collectively include heterogeneity in sampling, variable penetration of biologics and compatibility of different datasets. Copyright © 2012 S. Karger AG, Basel
- Publication
Dermatology (10188665), 2012, Vol 224, Issue 3, p236
- ISSN
1018-8665
- Publication type
Article
- DOI
10.1159/000338572