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神经科研究中常规收集的患者数据:系统制图综述。

Routinely collected patient data in neurology research: a systematic mapping review.

机构信息

Lancaster University Faculty of Health and Medicine, Furness College, Lancaster University, Bailrigg, Lancaster, LA1 4YG, England.

Lancashire Hospitals NHS Foundation Trust, Department of Neurology, Royal Preston Hospital, Sharoe Green Lane, Fulwood, Preston, PR2 9HT, England.

出版信息

BMC Neurol. 2020 Nov 27;20(1):431. doi: 10.1186/s12883-020-01993-w.

DOI:10.1186/s12883-020-01993-w
PMID:33243167
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC7694309/
Abstract

BACKGROUND

This review focuses on neurology research which uses routinely collected data. The number of such studies is growing alongside the expansion of data collection. We aim to gain a broad picture of the scope of how routine healthcare data have been utilised.

METHODS

This study follows a systematic mapping review approach which does not make a judgement on the quality of the papers included in the review, thereby enabling a complete overview of the field.

RESULTS

Of 4481 publications retrieved, 386 met the eligibility criteria for this study. These publications covered a wide range of conditions, but the majority were based on one or only a small number of neurological conditions. In particular, publications concerned with three discrete areas of neurological practice - multiple sclerosis (MS), epilepsy/seizure and Parkinson's disease - accounted for 60% of the total. MS was the focus of the highest proportion of eligible studies (35%), yet in the recent Global Burden of Neurological Disease study it ranks only 14th out of 15 neurological disorders for DALY rates. In contrast, migraine is the neurological disorder with the highest ranking of DALYs globally (after stroke) and yet it was represented by only 4% of eligible studies.

CONCLUSION

This review shows that there is a disproportionately large body of literature pertaining to relatively rare disorders, and a correspondingly small body of literature describing more common conditions. Therefore, there is potential for future research to redress this balance.

摘要

背景

本综述重点关注使用常规收集数据进行的神经病学研究。随着数据收集的扩展,此类研究的数量也在增加。我们旨在全面了解常规医疗保健数据的利用范围。

方法

本研究采用系统映射综述方法,不对纳入综述的论文质量进行判断,从而能够全面了解该领域的情况。

结果

在检索到的 4481 篇出版物中,有 386 篇符合本研究的纳入标准。这些出版物涵盖了广泛的疾病,但大多数基于一种或少数几种神经系统疾病。特别是,与神经病学实践的三个离散领域相关的出版物 - 多发性硬化症(MS)、癫痫/发作和帕金森病 - 占总数的 60%。MS 是符合条件的研究中比例最高的(35%),但在最近的全球神经疾病负担研究中,它在 15 种神经疾病中按残疾调整生命年(DALY)率排名仅为第 14 位。相比之下,偏头痛是全球 DALY 排名最高的神经疾病(仅次于中风),但它仅占符合条件研究的 4%。

结论

本综述表明,与相对罕见的疾病相比,文献数量不成比例地大,而描述更常见疾病的文献数量相应较小。因此,未来的研究有可能纠正这种不平衡。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2e56/7694309/c3a1959131ee/12883_2020_1993_Fig3_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2e56/7694309/0b4d3c6666ba/12883_2020_1993_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2e56/7694309/9294d37d1624/12883_2020_1993_Fig2_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2e56/7694309/c3a1959131ee/12883_2020_1993_Fig3_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2e56/7694309/0b4d3c6666ba/12883_2020_1993_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2e56/7694309/9294d37d1624/12883_2020_1993_Fig2_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2e56/7694309/c3a1959131ee/12883_2020_1993_Fig3_HTML.jpg

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Lancet Neurol. 2019 May;18(5):459-480. doi: 10.1016/S1474-4422(18)30499-X. Epub 2019 Mar 14.
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BMJ Open. 2022 Apr 29;12(4):e058738. doi: 10.1136/bmjopen-2021-058738.
用于支持开发针对使用队列和常规收集健康数据的随机对照试验的 CONSORT 扩展的范围综述议定书。
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