BPSU | RCPCH

The British Paediatric Surveillance Unit is a world leading centre for rare paediatric disease surveillance. It enables doctors and researchers to investigate how many children in the UK and Republic of Ireland are affected by particular rare diseases, conditions or treatments each year.

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BPSU study - Severe microcephaly (SSM-UKI)

Surveillance of severe microcephaly in the UK and Ireland commenced in October 2017. This study will find out how many UK babies are born with microcephaly each year and how seriously this affects their health and developmental outcomes, including problems with hearing and vision. It will provide a ...

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BPSU study - 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...

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BPSU study - 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 ...

BPSU

Rare disease

Research

Committee

BPSU Scientific Committee

The British Paediatric Surveillance Unit Scientific Committee oversees the scientific matters of the BPSU, providing advice and support for researchers wishing to undertake surveillance of rare paediatric disorders through the BPSU 'electronic orange card' reporting scheme.

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BPSU study - 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...

Committee

BPSU Partnership Board

The officers of the British Paediatric Surveillance Unit are responsible to the Scientific Committee, which in turn is accountable to the BPSU Partnership Board. The Partnership Board was established in 2014 and comprises representation from the three parent bodies of the BPSU, the RCPCH, Department...

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BPSU study - 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...

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BPSU study - Congenital Zika syndrome

Surveillance of congenital Zika syndrome in infants under and including six months of age in the UK and Ireland commenced in April 2016. This study aimed to identify all babies with microcephaly or neurological abnormalities born in the UK and Ireland to mothers who have travelled to countries with ...

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BPSU study - Childhood disintegrative disorder

Surveillance of childhood disintegrative disorder (CDD) concluded in November 2017 and is in the follow-up period of its data collection. The study will provide important information regarding the number of new cases of CDD in the UK and Ireland, the clinical presentation management of those with CD...

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BPSU study - PIND (Progressive Intellectual and Neurological Deterioration)

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 or not a child has developed variant Creutzfeldt Jakob disease ...