Psoriasis Registries Worldwide: Systematic Overview on Registry Publications

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Psoriasis Registries Worldwide: Systematic Overview on Registry Publications. / Eissing, L; Rustenbach, S J; Krensel, M; Zander, N; Spehr, C; Radtke, M A; Naldi, L; Augustin, M.

In: J EUR ACAD DERMATOL, Vol. 30, No. 7, 07.2016, p. 1100-1106.

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@article{b85ab56bd6bd4191800b0b5db52cd34c,
title = "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.",
keywords = "Journal Article, Review",
author = "L Eissing and Rustenbach, {S J} and M Krensel and N Zander and C Spehr and Radtke, {M A} and L Naldi and M Augustin",
note = "{\textcopyright} 2016 European Academy of Dermatology and Venereology.",
year = "2016",
month = jul,
doi = "10.1111/jdv.13634",
language = "English",
volume = "30",
pages = "1100--1106",
journal = "J EUR ACAD DERMATOL",
issn = "0926-9959",
publisher = "Wiley-Blackwell",
number = "7",

}

RIS

TY - JOUR

T1 - Psoriasis Registries Worldwide: Systematic Overview on Registry Publications

AU - Eissing, L

AU - Rustenbach, S J

AU - Krensel, M

AU - Zander, N

AU - Spehr, C

AU - Radtke, M A

AU - Naldi, L

AU - Augustin, M

N1 - © 2016 European Academy of Dermatology and Venereology.

PY - 2016/7

Y1 - 2016/7

N2 - 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.

AB - 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.

KW - Journal Article

KW - Review

U2 - 10.1111/jdv.13634

DO - 10.1111/jdv.13634

M3 - SCORING: Journal article

C2 - 27135876

VL - 30

SP - 1100

EP - 1106

JO - J EUR ACAD DERMATOL

JF - J EUR ACAD DERMATOL

SN - 0926-9959

IS - 7

ER -