Rare disease

Basic page

BPSU study - Button battery ingestion, inhalation or insertion

BPSU surveillance of the unintentional ingestion, inhalation or insertion of button batteries in children requiring removal or attempted removal commenced in February 2021. This study will help inform services for the prevention and treatment of children who have accidentally swallowed or choked on ...

Area of medicine

Community child health

Ear nose and throat

Emergency medicine

General paediatrics

Intensive care medicine

LifeArc - Philanthropic Fund [CLOSED]

https://www.lifearc.org/funding/philanthropic-fund/

The LifeArc Philanthropic Fund provides grants to academic researchers working to advance new treatments and diagnostics for rare diseases.

Award programme/theme

Project grant

Funding amount range

Over £500,000

Action for A-T - Project Grants [CLOSED]

https://actionforat.org/a-t-research/information-for-researchers/

Action for A-T funds medical research that speeds up the process of identifying a cure for Ataxia Telangiectasia (A-T) or treatments that delay or prevent the disabling effects of the condition.

Award programme/theme

Project grant

Funding amount range

£100,001 to £250,000

Maximum duration

3 years

Basic page

RCPCH and Newlife Clinical Research Fellowship Award

The joint clinical research fellowship by RCPCH and Newlife the Charity for Disabled Children aims to identify and nurture a new generation of child health researchers. We announce our first winner, Dr Asma Soltani, who will carry out UK research into Rett syndrome, a rare genetic disorder.

Rare disease

Fellowships, awards and prizes

Research

News

A rare treat - two young people report back from our rare disease tea party

8 August 2019

Since 2014 the British Paediatric Surveillance Unit has held this annual event - young people living with rare disease and health professionals working in the field share their experiences. Our interns went along to find out more...

News

BPSU surveillance of HIV infection and vertical HIV exposure now concluded

6 August 2019

Surveillance will continue through the National Surveillance of HIV in Pregnancy and Childhood (NSHPC) team at University College London Great Ormond Street Institute of Child Health.

Basic page

BPSU study - Herpes simplex virus

BPSU surveillance of neonatal herpes simplex virus disease in infants less than 90 days of ages commenced in July 2019 and will run for 4.5 years. This study will assess the current disease burden of HSV to inform future practice on detection, prevention and management of this dangerous disease.

Resource

BPSU - 30th anniversary report (2016)

For over 30 years the British Paediatric Surveillance Unit has been facilitating research into childhood rare diseases and disorders. To mark this milestone and to celebrate the Unit's ongoing impact we published our 30 year anniversary report.

BPSU

Rare disease

Research

Basic page

BPSU study - Severe chronic fatigue syndrome / myalgic encephalitis (CFS/ME)

This BPSU study will collect information on all young people aged between five and 16 years who receive a diagnosis of severe Chronic Fatigue Syndrome or Myalgic Encephalitis (CFS/ME). The study aims to explore how many young people across the UK and Ireland have severe CFS/ME, the length of time fr...

Community child health

Basic page

BPSU study - Severe complications of enterovirus or human parechovirus infection

This BPSU study investigates severe complications of enterovirus (EV) or human parechovirus (HPeV). It is intended to improve our knowledge of the age-specific incidence, clinical presentation and management, as well describe the survival and rates of long-term complications of severe EV/HPeV infect...

Cardiovascular

Child and adolescent mortality

Infectious diseases

Intensive care medicine