Rare disease

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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 ...

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BPSU surveillance - Congenital rubella

Surveillance of congenital rubella in the UK up to the age of 16 years is carried out by the Integrated Screening Outcomes Surveillance Service (ISOSS) on behalf of the NHS Infectious Diseases in Pregnancy Screening Programme. Congenital rubella is a notifiable disease. However, to support the s...

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BPSU surveillance - HIV infection and vertical HIV exposure

National surveillance of HIV infection and vertical HIV exposure is carried out by the National Surveillance of HIV in Pregnancy & Childhood (NSHPC) and covers all infants born to HIV positive women in the UK and Ireland, as well as all children diagnosed with HIV (regardless of country of birth) be...

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BPSU - International activities

The BPSU is a founding member of the International Network of Paediatric Surveillance Units (INoPSU). INoPSU's mission is the advancement of knowledge of uncommon childhood infections and disorders and the participation of paediatricians in surveillance on a national and international basis.

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BPSU - Patient and public involvement

The BPSU is committed to ensuring that patient and public involvement (PPI) is embedded in its work in every way possible. The unit works with investigators to encourage and support public and patient involvement in their research. The information provided here is designed to support, not replac...

BPSU

Conditions

Rare disease

Engaging children and young people

Children and young people's voice

Patient information

Patient involvement

Research

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BPSU Sir Peter Tizard research bursary

Each year we invite trainee paediatricians and newly qualified consultants planning a surveillance study through the British Paediatric Surveillance Unit (BPSU) to apply for this bursary. The successful applicant receives a free slot on the BPSU Orange Card and a stipend towards their training needs...

BPSU

Rare disease

Fellowships, awards and prizes

Research

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BPSU impact - case studies

The BPSU has facilitated research into over 100 rare conditions. In many instances, the findings have had an immense influence over decisions relating to the condition and patient. Read case studies on the impact of BPSU's research below.

BPSU

Rare disease

Research

Resource

Recipes for Engagement - children and young people in the lead - RCPCH &Us

Are you a child health worker? We want to make it easy for you to find out what those using your services think. With a cooking theme, our easy-to-read guide gives tested ideas on practically and creatively engaging children and young people.

Rare disease

Engaging children and young people

Children and young people's voice

Document