Rare disease

Basic page

BPSU study - Glucocorticoid induced adrenal suppression

BPSU surveillance of outcome of symptomatic glucocorticoid induced adrenal suppression commenced in September 2020. This study will estimate how many people are presenting to healthcare providers with adrenal suppression causing symptoms because of them currently or previously taking glucocorticoid ...

Basic page

BPSU study - Outcome of resuscitated term babies with no heart rate detected at 10 minutes of age

This surveillance study commenced in November 2020. This study will identify the incidence of term babies who receive resuscitation following birth and have no heart rate detected at 10 minutes of age: describe the demographic characteristics, clinical features and initial management of this populat...

Intensive care medicine

Basic page

Child Health Futures - Rare Disease Development Fund

Getting funding for research into rare diseases is still a challenge. The RCPCH, in collaboration with the British Paediatric Surveillance Unit (BPSU), has set up this fund to support research and education in children’s rare diseases. Can you support us?

BPSU

Rare disease

Research

Basic page

BPSU study - Clinical characteristics of children with pneumococcal meningitis

BPSU surveillance of the clinical characteristics of children with pneumococcal meningitis is due to commence in January 2020. This study will estimate the incidence of childhood pneumococcal meningitis in the era of pneumococcal conjugate vaccines; describe symptoms and signs at presentation; descr...

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]

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]

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.