关键词: Hidradenitis suppurativa Missing data Reporting Standardization Transparency

Mesh : Female Humans Male Biomedical Research / standards Hidradenitis Suppurativa / immunology epidemiology diagnosis Registries / statistics & numerical data Research Design / standards

来  源:   DOI:10.1016/j.jid.2024.04.014

Abstract:
Hidradenitis suppurativa (HS) is a complex inflammatory skin condition affecting 0.1-4% of the population that leads to permanent scarring in the axilla, inframammary region, groin, and buttocks. Its complex pathogenesis involves genetics, innate and adaptive immunity, microbiota, and environmental stimuli. Specific populations have a higher incidence of HS, including females and Black individuals and those with associated comorbidities. HS registries and biobanks have set standards for the documentation of clinical data in the context of clinical trials and outcomes research, but collection, documentation, and reporting of these important clinical and demographic variables are uncommon in HS laboratory research studies. Standardization in the laboratory setting is needed because it helps to elucidate the factors that contribute mechanistically to HS symptoms and pathophysiology. The purpose of this article is to begin to set the stage for standardized reporting in the laboratory setting. We discuss how clinical guidelines can inform laboratory research studies, and we highlight what additional information is necessary for the use of samples in the wet laboratory and interpretation of associated mechanistic data. Through standardized data collection and reporting, data harmonization between research studies will transform our understanding of HS and lead to novel discoveries that will positively impact patient care.
摘要:
化脓性汗腺炎(HS)是一种复杂的炎症性皮肤病,影响0.1-4%的人群,导致腋下永久性瘢痕形成,乳腺下区域,腹股沟,还有臀部.其复杂的发病机制涉及遗传学,先天和适应性免疫,微生物群,和环境刺激。特定人群有较高的HS发病率,包括女性和黑人以及有相关合并症的人。在临床试验和结果研究的背景下,HS注册中心和生物库已经为临床数据的文档制定了标准,但是收藏,文档,在HS实验室研究中,这些重要的临床和人口统计学变量的报告并不常见。需要在实验室环境中进行标准化,因为它有助于阐明机械上导致HS症状和病理生理学的因素。本文的目的是开始为实验室环境中的标准化报告奠定基础。我们讨论了临床指南如何为实验室研究提供信息,我们强调了在湿实验室中使用样品和解释相关机械数据所需的额外信息。通过标准化的数据收集和报告,研究之间的数据协调将改变我们对HS的理解,并导致新的发现,这将对患者护理产生积极影响。
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