Rare disease

Basic page

BPSU study - 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 car...

Clinical genetics

Community child health

Resource

Reye's Syndrome website - for families and health professionals

The National Reye's Syndrome Foundation, which is now part of RCPCH, provides evidence-based information on a dedicated website about this very rare condition that affects children and young people.

Rare disease

Patient information

News

RCPCH and Newlife Clinical Research Fellow announced

19 May 2020

The Royal College of Paediatrics and Child Health (RCPCH) and Newlife the Charity for Disabled Children are pleased to announce their first joint clinical research fellowship award in childhood disability has been awarded to Dr Asma Soltani at the University of Cambridge. Dr Soltani will research Re...

Myotubular Trust - Project Grants

https://myotubulartrust.org/research/grants-process/

Funding projects that will help find a cure and / or a treatment for any form of centronuclear and myotubular myopathy (congenital X-linked recessive; congenital autosomal recessive; autosomal dominant), focusing on research that would not generally be funded by public or industrial funding sources.

Award programme/theme

Project grant

Funding amount range

£100,001 to £250,000

Maximum duration

2-3 years

Submission deadline

26 June 2020

Basic page

BPSU study - Multisystem inflammatory syndrome, Kawasaki disease and toxic shock syndrome

Surveillance of multisystem inflammatory syndrome has now commenced. Our aim is to understand the incidence, presenting features, laboratory features, management, clinical course and the outcome of this potentially new syndrome characterised by hyperinflammation which is temporally associated with C...

Resource

Paediatric multisystem inflammatory syndrome temporally associated with COVID-19 (PIMS) - national consensus management pathway

Most children are asymptomatic or exhibit mild symptoms from COVID-19 infection. However, a small number have been identified who develop a significant systemic inflammatory response, which is also known as PIMS-TS or PIMS). In September 2020 a national consensus management pathway was published to ...

Immunology

Intensive care medicine

Rare disease

COVID-19

Basic page

BPSU study - Conservative care in end-stage kidney disease

This surveillance study commenced in September 2020. This study aims to identify children with ESKD who receive conservative care, to understand how the decision not to start renal replacement therapy is made and important factors that are considered in this decision-making process.

News

RCPCH responds to NICE guidance on cannabidiol use in two forms of childhood epilepsy

5 February 2020

Dr Mike Linney, Registrar and Chair of the Ethics Committee for RCPCH, welcomes recent guidance from NICE, but notes the urgent need for high quality, independent research on this medicine to provide the best possible care for children with complex epilepsy.

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