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

Research output: Contribution to journalArticle

32 Citations (Scopus)

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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Psoriasis
Registries
Therapeutics
Biological Products
Safety
Population

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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

Challenges for synthesising data in a network of registries for systemic psoriasis therapies. / Ormerod, A; 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.

In: Dermatology, Vol. 224, No. 3, 07.2012, p. 236-243.

Research output: Contribution to journalArticle

Ormerod, A, Augustin, M, Baker, C, Chosidow, O, Cohen, AD, Dam, TN, Garcia-Doval, I, Lecluse, LL, Schmitt-Egenolf, M, Spuls, PI, Watson, KD & Naldi, L 2012, 'Challenges for synthesising data in a network of registries for systemic psoriasis therapies', Dermatology, vol. 224, no. 3, pp. 236-243. https://doi.org/10.1159/000338572
Ormerod A, Augustin M, Baker C, Chosidow O, Cohen AD, Dam TN et al. Challenges for synthesising data in a network of registries for systemic psoriasis therapies. Dermatology. 2012 Jul;224(3):236-243. https://doi.org/10.1159/000338572
Ormerod, A ; 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. / Challenges for synthesising data in a network of registries for systemic psoriasis therapies. In: Dermatology. 2012 ; Vol. 224, No. 3. pp. 236-243.
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