Psoriasis registries worldwide: systematic overview on registry publications

Abstract

Background: Safety and efficacy of new treatments are analyzed in clinical trials but their capacity to show potential effects of long-term treatment and more than short latency of onset is limited. To meet this challenge, patient registries (of treatments or diseases) collect prospective data of real-world patients in daily practice without tight selection of patients.

Objective: The aim of this article was to identify existing psoriasis patient registries by published articles and evaluation of monitored treatment classes, patients, research questions addressed, and measurement instruments implemented.

Materials & methods: A systematic review of Medline (PubMed) and Embase (Ovid) databases for publications on psoriasis patient registries, including cross-validation was conducted October 2015.

Results: 14 patient registries for long-term observation of psoriasis patients in real-world care were identified. Registries were established since 2005, the majority is located in Europe. The number of published studies from single registries ranged from 1 to 10. Most registries include patients treated by conventional systemics as well as biologics. The number of patients analyzed ranged from 35 to >12 000 patients. The publications mostly addressed safety issues or treatment outcomes, followed by baseline description, drug survival, predictor analyses, and treatment patterns.

Conclusion: A variety of local, national, and international patient registries collect longitudinal data on (systemic) psoriasis treatment. The number of publications reflect the main registry objectives of safety and effectiveness, with additional therapy-related investigations being addressed as well. Based on the information from publications, the combination of data from these registries will involve many methodological challenges. To gain comparability and combinability of cohorts and data across registries, further harmonization of data collection is demanded.