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.

Basic page

BPSU study - Raised blood lead levels

Surveillance of raised blood levels in children concluded its surveillance period in June 2012. A report was published in 2018, and a link to the document can be found below.

Basic page

BPSU study - Gender identity disorder

Surveillance of gender identity disorder concluded in May 2013. This study was a dual surveillance project collecting data both through the British Paediatric Surveillance Unit (BPSU) and the Child and Adolescent Psychiatric Surveillance System (CAPSS) at the Royal College of Psychiatrists. The stud...

Basic page

BPSU study - End-stage renal disease (ESRD)

Surveillance of end-stage renal disease in early infancy concluded in May 2012. The study group are yet to publish a paper.

BPSU

Rare disease

Research

Basic page

BPSU study - Congenital hypothyroidism

Surveillance of primary congenital hypothyroidism concluded in June 2012 with follow-up to June 2015. This UK study explored how many babies and children up to and including five years of age were found each year to have congenital hypothyroidism. This included babies diagnosed after a positive newb...

Basic page

BPSU study - autoimmune Addison’s disease in children

Surveillance of Autoimmune Addison's disease commenced in July 2011 and concluded in July 2012. The study was led by Dr Hima Bindu Avatapalle, winner of the Sir Peter Tizard Bursary 2009-10. A paper has yet to be published.

Basic page

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 ...

Basic page

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...

Basic page

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.

Basic page

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...