Studies
This page includes both current and completed BPSU studies. You can browse studies by speciality, year or status using the filters below, and access study summaries, protocols, publications and patient information materials where available. Together, these studies provide an important evidence base for clinical practice, service development, public health policy and future research.
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Sydenham’s chorea
The first ever prospective surveillance of Sydenham's chorea in the UK and Ireland commenced in November 2018 and ran for two years. This study was undertaken in collaboration with the Exeter Medical School and the Child and Adolescent Psychiatry Surveillance System. The study aims to examine the service related incidence of SC, characterise clinical presentation and outcomes and report on current practice in investigation and management.
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Deaths in children with epilepsy
Surveillance of deaths in children and young people with epilepsy (excluding Scotland) commenced in October 2016. The study team were hoping to determine the size of the problem of deaths in children affected by epilepsy, to compare the differences between sudden unexplained death in epilepsy (SUDEP) and other causes of epilepsy deaths, and to allow future studies in this field.
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Cerebrovascular disease, Stroke and Stroke like illness
At the time of this study, in the United Kingdom, the actual number of children affected annually by stroke remained unknown. This study aimed to estimate the incidence of stroke, stroke-like illness and cerebrovascular disease in all children between birth and 16 years and to determine the national and regional patterns of presentation and of neurological referral. Additionally, the study assessed the aetiology considered at diagnosis in incident cases and describe practices regarding management, investigation and prevention of recurrence.
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Encephalitis in early childhood (2 months – 3 years)
This study was undertaken from October 1998 to September 2001. Encephalopathy in early childhood made a substantial contribution to chronic neurological disability, and the impact on individual families, frequently exacerbated by diagnostic uncertainty, may be devastating. At the time of surveillance, the causes were largely unknown. This study wanted to determine the aetiology of encephalitis in children from 2 months old to their third birthday, and in particular, the role of infection with HHV-6 and HHV-7.
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Subdural haematoma and effusion
This study took place from March 1998 to February 2000. It aimed to estimate the incidence of fatal and very severe allergic reactions to food in children. To describe the circumstances in which these reactions occurred and describe the clinical course and management of these cases. Additionally, the study wanted to determine whether such children had previous reactions and whether the severity of these previous reactions predicted later severe reactions.
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Congenital brachial palsy
This study provided an opportunity to gather population-based data about Congenital brachial palsy. It aimed to estimate the incidence of Congenital brachial palsy, study its aetiology and provide more information about the natural history of CBP in the first year of life. The study ran from March 1998 to March 1999, when the true incidence in the UK and the Republic of Ireland was unknown.
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Progressive Intellectual and Neurological Deterioration (PIND)
Surveillance of Progressive Intellectual and Neurological Deterioration (PIND) in Children (including Creutzfeldt-Jakob Disease) through the British Paediatric Surveillance Unit began in May 1997 with the main aim of determining whether a child developed variant Creutzfeldt-Jakob disease (vCJD). As the clinical presentation of vCJD was not typical of classical CJD, the aim was to detect suspected cases by looking at a broader group of conditions.
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Pyridoxine dependent seizures
This study aimed to determine the prevalence of definite or possible pyridoxine-dependent seizures in children under 16 years of age. Prospectively study the incidence in children under five years of age and define the clinical presentation, natural history, and clinical management of pyridoxine dependency.
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Subacute sclerosing panencephalitis 2
The surveillance of SSPE started in September 1995, for the second time. Its main aim was to monitor the incidence of SSPE. At the time of this study, the number of cases since 1982 had fallen, which followed approximately ten years after the decline in measles due to the introduction of the vaccine. However, under-reporting may have been an issue. As the incidence appeared to fall, the importance of complete notification increased.
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Acute Flaccid Paralysis
This survey aimed to investigate whether paralytic "wild" polio still existed in the British Isles. The team investigated the clinical and laboratory features of new cases of acute flaccid paralysis to identify any caused by poliovirus and, if so, to distinguish "wild" strains from vaccine-like strains.
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Rett syndrome
The aim of the this BPSU study was to identify associations which may assist genetic investigation. Doctors were invited to report classic and atypical cases born on or after 1 January 1975.
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Haemorrhagic shock encephalopathy syndrome (HSES)
The aetiopathogenesis of haemorrhagic shock encephalopathy syndrome (HSES) remains unclear and after concern that a novel environmental agent was the cause, the British Paediatric Association and the Public Health Laboratory Service Communicable Disease Surveillance Centre in 1983 initiated surveillance of this condition in the British Isles. After 1986 cases were ascertained via the British Paediatric Surveillance Unit 'active' reporting scheme.
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