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 - Pierre Robin Sequence

Surveillance of Pierre Robin Sequence in the UK and ROI concluded in January 2017. The study team is hoping to identify the birth prevalence of Pierre Robin Sequence, outline its clinical presentation, initial management and 12 month clinical outcomes. The study is being led by Dr Marie Wright, winn...

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BPSU study - Nutritional rickets

Surveillance of nutritional rickets presenting to secondary care in children and young people concluded in March 2017. The study team hoped to ascertain the incidence of nutritional rickets and presentational features of the condition. The study group has now published its findings in the Archiv...

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BPSU study - British childhood visual impairment and blindness study

Surveillance of childhood visual impairment and blindness in the UK (excluding Republic of Ireland) ≤18 years of age concluded in October 2016. It is hoped that the findings from this study will inform planning of prevention and treatment strategies and targeting of screening; ‘map’ clinical and pub...

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BPSU study - Surgical ligation of the patent ductus arteriosus (PDA)

Surveillance of surgical ligation of the patent ductus arteriosus in premature babies concluded its surveillance period in September 2013. The study was led by Dr Lleona Lee, winner of the Sir Peter Tizard Bursary 2008-09. A paper has now been published in BMC Pediatrics. Link to the abstract ca...

BPSU

Rare disease

Research

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BPSU study - Glutaryl CoADehydrogenase Deficiency (GA1)

Surveillance of glutaric aciduria 1 concluded its surveillance period in July 2012. The study was led by Dr Beth Cheesebrough, winner of the Sir Peter Tizard Bursary 2007-08. The study group are yet to publish their findings.

Inherited metabolic medicine

Team profile

British Paediatric Surveillance Unit team

Resource

Female genital mutilation (FGM) - resources

FGM is a collective term for a range of procedures that involve partial or total removal of the external female genitalia, or other injury to the female genital organs for non-medical reasons. FGM, and taking a child abroad for the purpose of FGM, is child abuse. It is illegal in the UK and is a vio...

BPSU

Safeguarding