Kwok T'ng Chang, Dineen Robert A, Whitehouse William, Lynn Richard M, McSweeney Niamh, Sharkey Don
Centre for Perinatal Research, Population and Lifespan Sciences, School of Medicine, University of Nottingham, Queen's Medical Centre, Nottingham, NG7 2UH, United Kingdom.
Radiological Sciences, Mental Health & Clinical Neuroscience, School of Medicine, University of Nottingham, Queen's Medical Centre, Nottingham, NG7 2UH, United Kingdom.
Open Med (Wars). 2022 Sep 5;17(1):1417-1424. doi: 10.1515/med-2022-0554. eCollection 2022.
Neonatal stroke is a devastating condition that causes brain injury in babies and often leads to lifelong neurological impairment. Recent prospective population studies of neonatal stroke are lacking. Neonatal strokes are different from those in older children and adults. A better understanding of its aetiology, current management, and outcomes could reduce the burden of this rare condition. The study aims to explore the incidence and 2 year outcomes of neonatal stroke across an entire population in the UK and Republic of Ireland. This is an active national surveillance study using a purpose-built integrated case notification-data collection online platform. Over a 13 month period, with a potential 6 month extension, clinicians will notify neonatal stroke cases presenting in the first 90 days of life electronically via the online platform monthly. Clinicians will complete a primary questionnaire via the platform detailing clinical information, including neuroimaging, for analysis and classification. An outcome questionnaire will be sent at 2 years of age via the platform. Appropriate ethics and regulatory approvals have been received. The neonatal stroke study represents the first multinational population surveillance study delivered via a purpose-built integrated case notification-data collection online platform and data safe haven, overcoming the challenges of setting up the study.
新生儿中风是一种严重的疾病，可导致婴儿脑损伤，并常常导致终身神经功能障碍。目前缺乏对新生儿中风的前瞻性人群研究。新生儿中风与大龄儿童和成人的中风不同。更好地了解其病因、当前治疗方法和预后情况可以减轻这种罕见疾病的负担。该研究旨在探讨英国和爱尔兰共和国整个人口中新生儿中风的发病率及2年预后情况。这是一项积极的全国性监测研究，使用专门构建的综合病例报告-数据收集在线平台。在为期13个月的时间里，可能会延长6个月，临床医生将每月通过在线平台以电子方式报告出生后前90天内出现的新生儿中风病例。临床医生将通过该平台完成一份详细的临床信息（包括神经影像学）的初步问卷，用于分析和分类。在2岁时将通过该平台发送一份预后问卷。已获得适当的伦理和监管批准。新生儿中风研究是首个通过专门构建的综合病例报告-数据收集在线平台和数据安全港开展的跨国人群监测研究，克服了开展该研究的种种挑战。
