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BPSU reporting instructions
Download monthly reporting instructions for the British Paediatric Surveillance Unit - for each current study and previous months.
BPSU
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 - Past studies
Details of completed studies of the British Paediatric Surveillance Unit, listed alphabetically by condition.
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BPSU Rare disease tea party - reports from past events
Since 2014, we've invited stakeholders from across the rare disease community to this informal networking event. Young people speak about their experiences of living with a rare disease, and patient advocates, researchers and health professionals talk about working in the field. Read on for highligh...
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BPSU 'Orange Card' reporting scheme - applying to run a study
The British Paediatric Surveillance Unit (BPSU) welcomes applications from clinicians and researchers who wish to carry out national surveillance on rare childhood diseases.
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BPSU study - Behçet’s syndrome
Surveillance of Behçet’s syndrome in children and young people concluded in May 2017. The study team hope to ascertain the incidence and prevalence of Behçet’s syndrome in children and young people. They also hope to examine the clinical presentation and management of the syndrome.
A paper has n...
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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...
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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.