Rare disease

Event

Symposium: Best practices in paediatric genomics

20 November 2023

Birmingham city centre

In collaboration with NHS England Genomics Education Programme, the RCPCH Genomics Programme is hosting a half-day, in-person symposium to discuss best practices across paediatric genomics. As we have limited capacity for this event, we invite you to complete our short form to register your interest...

Clinical genetics

Genomics

Inherited metabolic medicine

Basic page

BPSU Study - Near Fatal Asthma

BPSU surveillance of the Near Fatal Asthma in children and young people in UK and Republic of Ireland will commence with the October 2022 reporting card on the new data collection platform. The study aims to describe the frequency, risks factors, clinical care and future asthma risk of children and ...

Basic page

BPSU Study - Acute Hepatitis 22

BPSU surveillance of the Acute Hepatitis in Children 2022 commenced in May 2022 collecting cases seen from January 2022 onwards. This study aims to understand viral, non-viral or unidentified causes of this apparent increase in cases of acute hepatitis reported to the UKHSA. The study is being led b...

News

Think positively about FASD - reflections from a paediatrician

20 September 2021

Dr Patricia Jackson, a RCPCH Fellow based in Edinburgh, looks back on International Fetal Alcohol Spectrum Disorders Awareness Day, which was on 9 September. She shares, from a personal perspective, information gained on how paediatricians can become more aware of and make a diagnosis of FASD.

Document

BPSU-PHE Symposia series: COVID-19 from a Paediatric Perspective – recordings

More than 2,000 people joined one or both of these free events in late April 2021. Discussions covered the impact of COVID-19 on pregnancy, neonates and general paediatric populations and the rare syndrome, PIMS, as well as the wider impact of the pandemic on child health. If you missed the opportun...

BPSU

Rare disease

Public health

News

Richard Lynn to step down from BPSU with more than three decades of service

16 February 2021

After 31 years of dedicated service as the British Paediatric Surveillance Unit’s (BPSU) Scientific Coordinator, Richard Lynn will be leaving the BPSU at the end of March. Richard’s unparalleled commitment to the BPSU and rare disease epidemiology has been integral to the Unit’s continued success.

Basic page

BPSU study - Avoidant/Restrictive Food Intake Disorder (ARFID)

Surveillance of Avoidant/Restrictive Food Intake Disorder (ARFID) is due to commence in March 2021. In conjunction with parallel reporting through the Child and Adolescent Psychiatric Surveillance System, this study aims to establish incidence rates of ARFID presenting to secondary health care, refe...

Area of medicine

Academic medicine

Allergies

Community child health

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

Document

PIMS: the COVID-19 linked syndrome affecting children - information for families

Most children and teenagers do not become seriously ill with COVID-19. But doctors have seen a very small number of patients with an unusual condition which seems to be linked to the virus. This syndrome is very rare, and most children will not be seriously affected. If you're worried, seek help...

Area of medicine

Cardiovascular

Child and adolescent mortality

Intensive care medicine

Rare disease

COVID-19