BPSU surveillance - Congenital rubella

Surveillance of congenital rubella in the UK up to the age of 16 years is carried out by the Integrated Screening Outcomes Surveillance Service (ISOSS) on behalf of Public Health England's Infectious Diseases in Pregnancy Screening Programme. The ISOSS team commissions the British Paediatric Surveillance Unit (BPSU) to collect notifications from clinicians throughout the UK. Monitoring of these cases enables ISOSS to identify whether maternal infections were acquired abroad or at home, and to maintain awareness of this condition.

ISOSS team

Helen Peters (ISOSS surveillance manager) & Kate Francis (ISOSS surveillance coordinator)
Population, Policy and Practice
UCL GOS Institute of Child Health
30 Guilford Street
London WC1N 1EH
Email: helen.peters@nhs.net / kate.francis3@nhs.net

Website: Integrated Screening Outcomes Surveillance System at UCL

About the collaboration

Overview

Surveillance aims to monitor the effectiveness of the rubella immunisation programme by determining the incidence of congenital rubella and investigating the circumstances surrounding any new cases.

Fewer than 20 congenital rubella births have been reported altogether since 1997, and only a handful of rubella-associated terminations.

About half of the recently reported infants had mothers who acquired infection abroad in early pregnancy, generally in their country of origin.

Most of the remaining cases were children with mothers who, though they acquired infection in the UK, were born abroad.

You can download the protocol card, including references, below.

Case definition

Any infant (live or still born) or child up to 16 years of age born in the UK (regardless of where maternal infection was acquired) or abroad who has suspected or confirmed congenital rubella.

Reporting instructions

Please report any infant or child seen by you for the first time in the past month who meets the case definition, regardless of country of birth.

Duration

The surveillance started in January 1990 and is ongoing.

Funding

The National Congenital Rubella Surveillance Programme is funded by Public Health England's Infectious Diseases in Pregnancy Screening Programme.

Approval

Patient data is collected by ISOSS under legal permissions granted to PHE under Regulation 3 of The Health Service (Control of Patient Information) Regulations 2002.

PHE has permission from Parliament to collect this data without the need to seek consent from individual patients.

The ISOSS service also conforms to the requirements of the Data Protection Act (2018).

Support group

Further information