Challenges for synthesising data in a network of registries for systemic psoriasis therapies

A Ormerod, M Augustin, C Baker, O Chosidow, A D Cohen, T N Dam, I Garcia-Doval, L L Lecluse, M Schmitt-Egenolf, P I Spuls, K D Watson, L Naldi

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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.
Original languageEnglish
Pages (from-to)236-243
Number of pages8
JournalDermatology
Volume224
Issue number3
DOIs
Publication statusPublished - Jul 2012

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Ormerod, A., Augustin, M., Baker, C., Chosidow, O., Cohen, A. D., Dam, T. N., ... Naldi, L. (2012). Challenges for synthesising data in a network of registries for systemic psoriasis therapies. Dermatology, 224(3), 236-243. https://doi.org/10.1159/000338572