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

A. D. 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

    Research output: Contribution to journalArticlepeer-review

    43 Scopus citations

    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
    StatePublished - 1 Jul 2012

    Keywords

    • Biologics
    • Methodology
    • Psoriasis
    • Registry
    • Research network
    • Systemic therapy

    ASJC Scopus subject areas

    • Dermatology

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