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Published on: March 1, 2024
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Psoriasis registries worldwide: systematic overview on registry publications
L Eissing1, S J Rustenbach1, M Krensel1
1Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE), Hamburg, Germany.
Summary
Patient registries offer valuable real-world data on psoriasis treatments, capturing long-term safety and effectiveness beyond clinical trials. Harmonization is needed for combining data across these crucial psoriasis research resources.
Area of Science:
- Dermatology
- Clinical Research Methodology
- Real-World Evidence
Background:
- Clinical trials have limitations in assessing long-term treatment effects and onset latency for new therapies.
- Patient registries collect prospective, real-world data from diverse patient populations in routine clinical practice.
Purpose of the Study:
- To identify existing psoriasis patient registries through published literature.
- To evaluate the treatment classes, patient populations, research questions, and measurement instruments used in these registries.
Main Methods:
- Systematic review of Medline (PubMed) and Embase (Ovid) databases.
- Publications on psoriasis patient registries were identified and cross-validated.
- Data collection occurred in October 2015.
Main Results:
- Fourteen patient registries for long-term psoriasis observation were identified, primarily located in Europe and established since 2005.
- Registries cover patients on conventional systemics and biologics, with patient numbers ranging from 35 to over 12,000.
- Publications focused mainly on safety, treatment outcomes, baseline characteristics, drug survival, predictor analyses, and treatment patterns.
Conclusions:
- Numerous patient registries gather longitudinal data on systemic psoriasis treatment, reflecting objectives of safety and effectiveness.
- Combining data across registries presents methodological challenges.
- Harmonization of data collection is essential for achieving comparability and combinability of data across psoriasis registries.
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