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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Severe complications of enterovirus or human parechovirus infection
This BPSU study investigated severe complications of enterovirus (EV) or human parechovirus (HPeV). It intended to improve our knowledge of the age-specific incidence, clinical presentation and management, as well describe the survival and rates of long-term complications of severe EV/HPeV infections at 12 months.
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Enterovirus and parechovirus meningitis
Surveillance of enterovirus and parechovirus meningitis in infants less than 90 days of age concluded in July 2015. The study team hope to understand the clinical burden of the condition. A paper has now been published in Archives of Disease in Childhood - see below link to the abstract.
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Food protein induced enterocolitis syndrome (FPIES)
This BPSU study investigates food protein induced enterocolitis syndrome (FPIES), a rare delayed type of food allergy which leads to repeated vomiting and other gastrointestinal symptoms up to several hours after a problem food (or baby formula) is eaten. There is very limited data on FPIES in the UK and this study is intended to improve our knowledge of the incidence, clinical presentation and management as well as improve awareness amongst paediatricians. This has the potential to benefit patients and families through quicker diagnosis and instigation of effective management of FPIES. A paper has now been published in the Archives of disease in childhood.
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Congenital ichthyosis
This two year, prospective BPSU study investigates the incidence, early management and outcomes at 12 months, of babies born with harlequin ichthyosis (HI) or collodion membrane (CM) born between 1 November 2018 and 31 October 2020. These are rare genetic conditions characterised by thick, tight scaly skin and significant neonatal mortality.
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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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Fetal Alcohol Syndrome
Surveillance of Fetal Alcohol Syndrome (FAS) commenced in October 2018. The study aimed to determine the incidence of FAS in the UK and Ireland; investigate which services are accessed by babies and children affected by the condition; and raise awareness about FAS among clinical practitioners.
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Acute severe poisonings
This surveillance study aimed to determine the incidence of accidental poisoning; identify trends in severe poisonings that might inform public health interventions; describe the demographics of presenting populations; and calculate the severity of the poisoning event as determined by the EAPCCT poisoning severity score. The study was led by Dr Elizabeth Starkey, winner of the Sir Peter Tizard Bursary 2014-15.
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Severe chronic fatigue syndrome / myalgic encephalitis (CFS/ME)
This BPSU study collected information on all young people aged between five and 16 years who received a diagnosis of severe Chronic Fatigue Syndrome or Myalgic Encephalitis (CFS/ME). The study aimed to explore how many young people across the UK and Ireland have severe CFS/ME, the length of time from symptom onset to diagnosis and how the condition is managed in clinical services.
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Juvenile-onset Systemic Lupus Erythematosus
Surveillance of Juvenile-onset Systemic Lupus Erythematosus (JSLE) commenced in September 2017. This study aims to determine the incidence of JSLE in children and young people in the UK and Ireland. The data will be analysed to better understand the epidemiology and clinical features of the disease and how children and young people are accessing care.
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Listeria infection in infants
Surveillance of listeria infection in infants less than 90 days commenced in September 2017. The study aims to establish the incidence of listeria infection in young infants, define whether some ethnic groups or geographical areas are more affected and describe the management and clinical outcome of the infected babies in the UK and ROI. Results will inform national antibiotic policy for young infants.
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Life threatening bronchopulmonary dysplasia
Surveillance of life threatening bronchopulmonary dysplasia (BPD) commenced in July 2017. The study team aim to describe the incidence of life threatening BPD of prematurity, describe the antecedent factors, current treatment choices used in the UK and Ireland (including a description of the support mechanisms in terms of respiratory support alternatives) and describe the outcomes (to one year) for life threatening BPD of prematurity. A paper has now been published in the Archives of Disease in Childhood - Fetal and Neonatal Edition.
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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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