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.
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...
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...
16 January 2019
This BPSU study hopes to improve our knowledge of the incidence, clinical presentation and management of FPIES as well as improve awareness of the condition among paediatricians.
This BPSU study investigates food protein induced enterocolitis syndrome (FPIES), a rare delayed type of food allergy which leads to repeated vomiting and other gastrointestinal symptoms up to several hours after a problem food (or baby formula) is eaten. There is very limited data on FPIES in the U...
12 November 2018
This will study incidence, early management and outcomes of babies born with Harlequin ichthyosis (HI) or collodion membrane (CM). These are rare genetic conditions characterised by thick, tight scaly skin and significant neonatal mortality.
7 November 2018
The study aims to determine the incidence of FAS in the UK and Ireland, investigate which services are accessed by babies and children affected by the condition and raise awareness about FAS among clinical practitioners.
This BPSU study investigates the incidence, early management and outcomes at 12 months, of babies born with harlequin ichthyosis (HI) or collodion membrane (CM). These are rare genetic conditions characterised by thick, tight scaly skin and significant neonatal mortality.
The first ever prospective surveillance of Sydenham's chorea in the UK and Ireland commenced in November 2018 and will run for two years. This study is being undertaken in collaboration with the Exeter Medical School and the Child and Adolescent Psychiatry Surveillance System. The study aims to exa...
20 August 2018
Shamez will take over from Dr Richard Reading in September. The BPSU office, study teams, and Scientific Committee extend their gratitude to Richard for his astute leadership over the past five years.