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Published on: April 21, 2017
Neonatal stroke surveillance study protocol in the United Kingdom and Republic of Ireland
T'ng Chang Kwok1, Robert A Dineen2,3, William Whitehouse1
1Centre for Perinatal Research, Population and Lifespan Sciences, School of Medicine, University of Nottingham, Queen's Medical Centre, Nottingham, NG7 2UH, United Kingdom.
Insights
This study investigates neonatal stroke incidence and outcomes in the UK and Ireland. It establishes a new surveillance platform to track infant brain injury and long-term effects.
Area of Science:
- Neurology
- Pediatrics
- Public Health
Background:
- Neonatal stroke is a severe condition causing infant brain injury and lifelong disability.
- Prospective population studies on neonatal stroke are scarce.
- Understanding neonatal stroke's causes, treatment, and outcomes is crucial for reducing its impact.
Purpose of the Study:
- To determine the incidence and 2-year outcomes of neonatal stroke across the UK and Republic of Ireland.
- To establish a multinational population surveillance study for neonatal stroke.
- To utilize a novel online platform for efficient data collection and analysis.
Main Methods:
- An active national surveillance study employing a purpose-built integrated online platform for electronic case notification.
- Clinicians will report neonatal stroke cases presenting within the first 90 days of life.
- Data collection includes clinical information and neuroimaging, with outcome questionnaires at 2 years of age.
Main Results:
- The study successfully implemented a multinational population surveillance system.
- The online platform facilitated efficient case notification and data management.
- Ethical and regulatory approvals were secured for the study.
Conclusions:
- This study pioneers a novel approach to neonatal stroke surveillance using an integrated online platform.
- The established system provides a robust framework for understanding neonatal stroke epidemiology and outcomes.
- This methodology overcomes challenges in setting up multinational population studies.
Abstract:
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.
