Babies born at the limits of viability
Only 1 in 500 babies are born before 24 weeks' gestation; however, they comprise around a fifth of all baby deaths. There is wide variation between clinical teams as to whether a baby born at 22 or 23 weeks is considered viable and consequently whether they are reported as live born. In one hospital a woman may have their baby’s death registered as a neonatal death but in another hospital the same woman’s baby may have gone unregistered as a miscarriage. This has severe unrecognised consequences on the NHS and parents. Firstly it impacts on data quality as healthcare services are not compared on a "like for like" basis. Secondly it leads to inequalities in parents' access to maternity and paternity leave, financial support and provision of official documents for their baby. This study aims to produce an online education package for health professionals to reduce this variation and to offer web-based support for parents.
Children and young people who are very ill often need to be transferred to a specialist ward called a paediatric intensive care unit (PICU). The specialist teams that perform this transfer are called transport teams.
Across the country we know there are differences in how quickly transport teams can reach sick children and how the transport is performed. This may be because the PICU is very far away from the hospital from which the child needed to be transported from, or may be because of how busy transport teams are.
The main aim of the DEPICT study is to understand whether these differences influence how children recover and how children and their families experience being transported to a PICU. We hope the results from the study will help to improve how NHS transport services are organised in the future and to better support families who use the transport services.
MBRRACE-UK - Mothers and Babies: Reducing Risk through Audits and Confidential Enquiries in the UK
The MBRRACE-UK programme of work comprises national surveillance of late fetal losses, stillbirths and infant deaths, confidential enquiries into perinatal mortality and serious infant morbidity and the national confidential enquiry into maternal deaths. Its aims are to provide robust information to support the delivery of safe, equitable, high quality, patient-centred maternal, newborn and infant health services.
Modelling Neonatal Care Pathways
Following birth approximately 1 in 10 babies will require specialist neonatal care. These babies have a variety of medical issues, although often they will have been born preterm and need to stay in hospital for a long time. During their time in hospital, they will require a variety of treatments and types of care. This project investigates how to predict the length of stay preterm babies will have in hospital, whilst also considering the different types of care they will require.
PICANet - Paediatric Intensive Care Audit Network
The Paediatric Intensive Care Audit Network (PICANet), an international national audit run jointly by the Universities of Leicester and Leeds, collects data on all children admitted to a paediatric (children's) intensive care service in the United Kingdom and Ireland. During the past few years PICANet has shown that over 19,000 children are admitted to the paediatric intensive care service each year. PICANet collects information about all children cared for in paediatric intensive care units (PICU) and by the specialist paediatric intensive care transport services. The information collected is used to help find the best ways to treat and care for very sick children and to plan and provide future paediatric intensive care services.
PRISM-2 - PRemature Infants' Skills in Mathematics 2
PRISM logoPRISM-2 is a follow-on from the original PRISM Study. We are following up all the children who took part in the PRISM Study now they are in secondary school. The aims of the PRISM-2 are to find out how very premature children’s maths skills develop over childhood and what difficulties they might have in maths in secondary school. We will use the results of the study to develop a new web-based training programme for teachers to show them the best ways to support premature children’s learning in the classroom.
RECAP preterm - Research on European children and adults born preterm
RECAP logoThe overall aim of the RECAP preterm project is to improve the health, development and quality of life of children and adults born very preterm or with a very low birth weight. This aim will be achieved by combining extensive data from European cohort studies, which makes it possible to evaluate changes in outcomes over time while providing important information on how the evolution in care and survival of these high risk babies has changed their developmental outcomes and quality of life.
SHIPS - Screening to improve health in very preterm infants in Europe
SHIPS logoThe SHIPS Study is a European research project which aims to find out about the kinds of follow-up care that very premature babies receive after they are discharged from hospital and how differences in the kinds of support parents receive might be related to their child’s health and development. The information gained will be used to develop guidelines that doctors, health and education professionals can follow to enable them to provide the best long term support for very premature babies and their families.
Standardising the PARCA-R (the Parent Report of Children's Abilities-Revised) questionnaire
The Parent Report of Children's Abilities-Revised (PARCA-R) is a parent questionnaire designed to assess the cognitive and language skills of 2 year old children. It is currently used to identify children born preterm who are at risk for developmental delay in clinical practice and in research studies. Although cut-off points were defined to identify children with moderate to severe developmental delay, they are not adequate to identify children with mild developmental delay. In this project we will use existing data to develop age- and sex-adjusted standardised scores that will allow clinicians and researchers to quantify precisely a child's developmental stage in relation to the norm and to screen all children for developmental delay.
The project is funded by a research grant from Action Medical Research and is led by Professor Samantha Johnson here at the University of Leicester. The project team includes Dr Bradley Manktelow and Dr Vasiliki Bountziouka (University of Leicester), Dr Louise Linsell (University of Oxford), Professor Peter Brocklehurst (University of Birmingham), Professor Dieter Wolke (University of Warwick) and Professor Neil Marlow (University College London).
The following studies have been completed or are no longer funded.
EMSYCAR - East Midlands and South Yorkshire Congenital Anomalies Register
EMSYCAR logoEMSYCAR collected data from 1 January 1997 to 31 March 2015. At first covering the former Trent region, it expanded in 2003 to include Northamptonshire, and monitored around 74,000 births per annum.
It aimed to establish the prevalence of congenital anomalies in the population, monitoring changes over time, and maintaining surveillance throughout the region, investigating any changes in frequency which become apparent. Research into the possible causes and consequences of individual congenital anomalies was undertaken, and data used to evaluate screening, prevention and treatment.
EPICure 2 - A study of extreme prematurity in 2006
EPICure 2 logoThe first EPICure Study was established in 1995 to determine the chances of survival and later health status by following up children who were born in the United Kingdom and Ireland at less than 26 weeks gestational age. EPICure 2 looked at a new cohort of babies born in England at 26 weeks of gestation or less during 2006.
LAMBS - Late And Moderate preterm Birth Study
LAMBS logoLAMBS was a population-based prospective study of late and moderate preterm birth that aimed to identify perinatal and neonatal risk factors contributing to preterm delivery in infants born in the Leicestershire and Nottinghamshire area and provide current information about the short and long-term outcomes of infants born at this preterm gestation. LAMBS highlighted areas in which changes in perinatal and neonatal care may improve babies' outcomes and aimed to provide information to guide allocation of resources for the provision of ongoing health and educational support for children and young adults with problems.
NIHR Programme Grant - Towards reducing variations in infant mortality and morbidity: a population approach
This research programme comprised two streams: Stream 1 investigated why babies die in the first year of life (e.g. prematurity, serious birth defect, infection) and explored health inequalities across the UK relating to local factors such as deprivation, ethnicity and place of birth. Stream 2 was the LAMBS study, which looked at the group of babies born moderately premature (4 to 7 weeks early).
PANDA - Preterm AND After
PANDA logoPANDA aimed to provide information about the long-term outcome of very preterm infants to health professionals for the counselling of parents, and to monitor the appropriateness of treatments and the cost effectiveness of neonatal intensive care services. Data was collected using questionnaires sent to the parents or guardians of The Neonatal Survey (TNS) infants who were born on or after 1 January 2007 at less than 31 weeks' gestation to a mother resident in East Midlands and Yorkshire and were survivors at 2 years of corrected age.
PRIME - Preterm Birth: Impact on Mathematics and Education
PRIME logoAround 70,000 children are born preterm (before 37 weeks of gestation) each year in England alone, many of whom may have health and developmental problems later in life. As the numbers of babies born preterm continues to increase, this will pose challenges for education systems worldwide. The PRIME Study was carried out by researchers in Leicester, Loughborough and Warwick to learn more about the outcomes of these children in order to provide important information for public policy and education planning.
PRISM - PRemature Infants' Skills in Mathematics
PRISM logoAround 13,000 babies are born very prematurely, before 32 weeks of gestation, each year in England alone. These babies are at high risk for problems with their thinking and learning later in life and up to 2 in 3 will have special educational needs, particularly in maths. The PRISM Study was carried out by researchers in Leicester, Loughborough, Nottingham and London to find out about the nature and causes of very premature children’s difficulties with maths in primary school to help understand the best ways to support their learning in the classroom.
TNS - The Neonatal Survey
TNS logoThe aims of TNS were to underpin clinical governance in relation to neonatal intensive care (NIC) services; facilitate the planning of the future strategy and development of NIC services; provide a research infrastructure for NIC; and provide education for professionals involved in NIC.
Understanding inequalities in cause-specific infant mortality
The key aim of this study was to understand the widening inequalities in infant mortality rates (death in the first year of life). We found that these inequalities were mostly due to high rates of babies born preterm (before 37 weeks of gestation) or with a congenital anomaly in more deprived areas.