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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Chronic recurrent multifocal osteomyelitis/ chronic nonbacterial osteomyelitis (CRMO/CNO)
Surveillance of chronic recurrent multifocal osteomyelitis/ chronic nonbacterial osteomyelitis (CRMO/CNO) commenced in October 2020. It is being led by Dr Chenqu Suo, winner of the Sir Peter Tizard Bursary 2018-19. This study intends to find out how common CRMO/CNO is, and who is involved in the care of CRMO/CNO patients. This will help to guide planning in healthcare services. Moreover, by looking at the existing treatments patients receive and their outcome, the study will allow us to understand the different treatments being used across the country, the short-term outlook, and complications.
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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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Childhood Scleroderma
This study occurred from July 2005 to July 2007. At that time, Scleroderma affected children as well as adults, and was associated with significant morbidity and mortality. This study aimed to ascertain the incidence of childhood scleroderma in the UK and Ireland and describe the usual presenting symptoms. It aimed to describe the delay between symptom onset and diagnosis as well as the pattern of care received by affected children before and after diagnosis. Additionally, it aimed to ascertain the demographics of the children affected and describe regional and ethnic variations in incidence
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Juvenile dermatomyositis
The BPSU surveillance aimed to: estimate the incidence of juvenile dermatomyositis, investigate if there was clustering of cases in time and place, evaluate the presenting features, the delay between onset and diagnosis and document initial drug treatment. The BPSU survey enabled the estimation of the incidence of juvenile dermatomyositis in the United Kingdom for the first time. It also allowed a picture to emerge of the presentation and treatment of the disease.
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