Introduction to the Programme Centre and its work

The role of the UK Newborn Screening Programme Centre

The UK Newborn Screening Programme Centre was established in 2002 with the overall objective of assuring high quality screening services for babies and their parents. We aim to achieve this through the development of a quality assurance programme and performance management framework for the blood spot screening programmes.

Funded by the Department for Health of England, on behalf of all four UK countries, the Programme Centre is a collaboration between Great Ormond Street Hospital for Children NHS Trust, the Institute of Child Health and the Institute of Education.

The Programme Centre has a remit to:

co-ordinate a UK-wide quality assurance programme in partnership with health professionals and parents;
monitor and facilitate improvement in the quality of screening processes and their outcomes for parents and babies; and
create a coherent focus and identity for newborn blood spot screening services.

By building on a highly successful existing service, the Programme Centre aims to ensure that an infrastructure is in place to meet the demands of the new screening programmes currently being introduced.

In our first three years and with a focus on phenylketonuria (PKU) and congenital hypothyroidism (CHT), standards covering all aspects of the journey undertaken by babies and their parents through the newborn screening process have been developed collaboratively with parents, health professionals and laboratory directors.

Developing standards for information and communication has been a key part of this work, led by the centre’s parent support research team. This work reflects wider trends in the NHS which emphasise the importance of ensuring that patients, and parents of young patients, have information and are given the opportunity to make informed choices about what they want for themselves or their baby.

The centre is also responsible for implementation of new programmes and in the last two years has implemented universal testing for cystic fibrosis (CF) and medium-chain acyl-CoA dehydrogenase deficiency (MCADD) in England and worked in collaboration with the NHS Sickle Cell and Thalassaemia programme in the implementation of screening for sickle cell disease (SCD).

Our programme includes:

Setting standards governing:

The screening process, including coverage, timeliness and communication of results to parents.
Clinical referral standards, including standards to support appropriate transition from screening to initial clinical management.

Establishing longer term outcomes:

Developing systems to establish longer-term outcomes for each disorder through patient registers.

Developing information and training for parents and professionals:

Identifying gaps in the information currently available.
Developing evidence-informed parent information.
Designing appropriate training for professionals on the provision of information to parents.

Disseminating our work by means of:

An annual report.
Web-based information.
Expert consensus documents, clinical guidelines and evidence-informed information for parents and professionals.