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布莱根银屑病和银屑病关节炎登记队列(COPPAR)的原理与设计

Rationale and Design of the Brigham Cohort for psoriasis and psoriatic arthritis registry (COPPAR).

作者信息

Schneeweiss Maria, Merola Joseph F, Karlson Elizabeth W, Solomon Daniel H

机构信息

Division of Rheumatology, Department of Medicine of the Brigham and Women's Hospital, Harvard Medical School, 75 Francis Street, Boston, MA, 02115, USA.

Department of Dermatology of the Brigham and Women's Hospital, Harvard Medical School, Boston, USA.

出版信息

BMC Dermatol. 2017 Aug 16;17(1):11. doi: 10.1186/s12895-017-0063-8.


DOI:10.1186/s12895-017-0063-8
PMID:28814312
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC5559864/
Abstract

BACKGROUND: Psoriasis (PsO) and psoriatic arthritis (PsA) are related conditions with poorly defined transition among them, risk factors for progression, complex treatment algorithms, and biomarkers for treatment response and long-term outcomes. We describe the development of a PsO/PsA registry at an academic medical center. METHODS: We developed a single-center PsO/PsA longitudinal disease registry including biorepository that captures relevant disease markers and treatment choices in a circumscribed population with a defined catchment area. We searched the electronic medical record for patients with visits in the last year for PsO or PsA. They formed the potentially eligible registry population. Baseline patient and provider questionnaires were developed using standardized measures, including demographics, comorbidities, medications, specific disease characteristics, functional status, quality of life, mental health, and resource use. An abbreviated set of items was collected every six month and at visits with treatment changes or disease flares. Biospecimens included blood (serum, plasma, DNA, RNA) and skin biopsy samples, with repeat collections of serum and plasma. Data from the EMR to augment the registry questionnaires are available on all patients. DISCUSSION: Searching the Brigham EMR system from 2013 through 2014, we found 1694 patients with PsO and 1028 with PsA. Their mean age was 55 years and 53% were female. Of these 17% had diabetes, 38% hyperlipidemia, and 45% hypertension. The median BMI was 29.6. PsA patients used more systemic prednisone, MTX, and TNF alpha inhibitors (47%, 60%, and 66%) compared to PsO patients (28%, 20% and 21%). We have collected plasma in 410 patients, DNA/RNA in 453 patients. In conclusion, we have developed a PsO/PsA registry to better define longitudinal disease characteristics, perform biomarker studies, and examine treatment trends.

摘要

背景:银屑病(PsO)和银屑病关节炎(PsA)是相关疾病,二者之间的转变定义不明确,存在病情进展的风险因素、复杂的治疗方案,以及用于治疗反应和长期预后的生物标志物。我们描述了在一家学术医疗中心建立银屑病/银屑病关节炎登记处的过程。 方法:我们建立了一个单中心银屑病/银屑病关节炎纵向疾病登记处,包括生物样本库,该样本库收集了特定集水区内特定人群的相关疾病标志物和治疗选择。我们在电子病历中搜索去年因银屑病或银屑病关节炎就诊的患者。他们构成了潜在符合条件的登记人群。使用标准化测量方法制定了基线患者和提供者问卷,包括人口统计学、合并症、药物治疗、特定疾病特征、功能状态、生活质量、心理健康和资源利用情况。每六个月以及在治疗改变或疾病发作就诊时收集一组简化的项目。生物样本包括血液(血清、血浆、DNA、RNA)和皮肤活检样本,并重复收集血清和血浆。所有患者均可获得来自电子病历的数据,以补充登记处问卷。 讨论:通过在2013年至2014年期间搜索布莱根妇女医院电子病历系统,我们发现了1694例银屑病患者和1028例银屑病关节炎患者。他们的平均年龄为55岁,53%为女性。其中17%患有糖尿病,38%患有高脂血症,45%患有高血压。体重指数中位数为29.6。与银屑病患者(分别为28%、20%和21%)相比,银屑病关节炎患者使用更多的全身性泼尼松、甲氨蝶呤和肿瘤坏死因子α抑制剂(分别为47%、60%和66%)。我们已收集了410例患者的血浆,453例患者的DNA/RNA。总之,我们建立了一个银屑病/银屑病关节炎登记处,以更好地定义疾病的纵向特征、开展生物标志物研究并研究治疗趋势。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/dab0/5559864/303bd354b26c/12895_2017_63_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/dab0/5559864/303bd354b26c/12895_2017_63_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/dab0/5559864/303bd354b26c/12895_2017_63_Fig1_HTML.jpg

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Rationale and Design of the Brigham Cohort for psoriasis and psoriatic arthritis registry (COPPAR).

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引用本文的文献

[1]
Usability of a Digital Registry to Promote Secondary Prevention for Peripheral Artery Disease Patients.

Mayo Clin Proc Innov Qual Outcomes. 2020-11-28

[2]
Adverse Events in Patients With Rheumatoid Arthritis and Psoriatic Arthritis Receiving Long-Term Biological Agents in a Real-Life Setting.

Front Pharmacol. 2019-9-11

本文引用的文献

[1]
Incremental Costs for Psoriasis and Psoriatic Arthritis in a Population-based Cohort in Southern Sweden: Is It All Psoriasis-attributable Morbidity?

J Rheumatol. 2016-3

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Neurosurg Focus. 2015-12

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J Rheumatol Suppl. 2015-11

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Rheum Dis Clin North Am. 2015-11

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J Eur Acad Dermatol Venereol. 2015-4-27

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PLoS One. 2014-5-29

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Arthritis Rheumatol. 2014-8

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