期刊
DERMATOLOGY
卷 224, 期 3, 页码 236-243出版社
KARGER
DOI: 10.1159/000338572
关键词
Biologics; Methodology; Psoriasis; Registry; Research network; Systemic therapy
类别
资金
- EADV
- AIFA (Italian Drug Agency)
- British Association of Dermatologists
- Abbott
- Pfizer
- Janssen-Cilag
- Merck-Serono
- MSD
- Academia Espanola de Dermatologia y Venereologia
- Agencia Espanola de Medicamentos y Productos Sanitarios
- Schering
- Wyeth
- Epiderm
- Swedish Board of Health and Welfare
- Swedish Association of Local Authorities and Regions
- Vasterbotten County Council
- LEO Pharma
- Biogen Idec
- Medac
- Amgen
- Centocor
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 (c) 2012 S. Karger AG, Basel
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