Tag Archives: research

Sleep seminar

father and sleeping baby
On 13th November Cerebra held a seminar at the Thistle Hotel in Birmingham on ‘Sleep in children with developmental difficulties’. The event was held in conjunction with the Cerebra Centre for Neurodevelopment Disorders at the University of Birmingham.

The purpose of the seminar was to disseminate the findings of recent sleep research including the use of both behavioural and medical interventions and to describe the practical implications for parents and professionals.

Key speakers included:

  • Dr Andy Badshaw (University of Birmingham)- An introduction to sleep
  • Prof Paul Gingras (Guys and St Thomas) – Sleep in children with neurodevelopmental disorders
  • Lisa Fishwick (Parent) – The impact of having a child with sleep disturbances
  • Moira Draper (Cerebra) – Cerebra sleep services
  • Dr Luci Wiggs, (Oxford Brookes University)- Non-pharmacological approaches to sleep problems in children with neurodevelopmental disorders
  • Sleep research at the Cerebra Centre for Neurodevelopmental Disorders.

We had a very good turnout, with 74 delegates attending on the day. The presentations were excellent and stimulated much dynamic discussion amongst the group. Delegates said the day provided ‘good variation of topics and good signposting to relevant services; definitely felt more empowered to deal with sleep issues’ and stressed how important it was to have a parents view of sleep problems and their approach to a solution.

Next time delegates would like a dedicated seminar addressing sensory processing, challenging behaviour and mental health in children with developmental disabilities and more parent stories, talking about what worked for them.

PenCRU Family Fun Day

The Peninsula Cerebra Research Unit for Childhood Disability Research hold family fun day at Pennywell Farm in Devon.

The Peninsula Cerebra Research Unit for Childhood Disability Research (PenCRU) recently held their annual family fun day at Pennywell Farm in Devon.

The event was organised in order to thank the unit’s Family Faculty which is made up of all the families who have been involved in the research that the unit carries out. The day was a huge success and PenCRU wanted to thank everyone who took part, especially the unit’s very own Chris Morris.

Chris “volunteered” to take part in a cream pie challenge which saw many of the children who were in attendance queue up to make sure he was well and truly covered in pie! The staff at PenCRU even made sure there was video evidence of the challenge which can be seen below. It was all for a good cause however with Chris choosing to donate sponsorship raised through the challenge to Cerebra and our work.

The PenCRU unit aims to carry out research that is relevant to families with disabled children and is there to respond to questions from families about therapies and health services for all children and young people affected by disability.

Towards a real impact on prenatal brain damage

Brain tractography

Brain tractography

We take a look at the pioneering work of the Cerebra Foetal Research Project at the University of Barcelona.

The human brain undergoes a long phase of development that starts in foetal life and ends much later in life. The most critical steps take place in the mother’s womb and during the first two years of life. Millions of neurons are being generated every day and start establishing connections, determining how our brain is going to work for the rest of our lives. This extremely complex process is governed by information contained in our genes, but also by the environment. Any disturbance may have a critical influence in the delicate sequence of events regulated in the genetic blueprint.

One in ten children has neurodevelopmental problems. It is estimated that about two thirds of these are of prenatal origin and in most instances, the problem occurred during foetal life, long before labour started. Severe forms of brain damage affect about 2/1000 of all new-borns and are expressed by serious complications including cerebral palsy and/or intellectual disability.

The vast majority of brain problems however, are manifested as subtle developmental disturbances. These cases are not associated with overt brain injury, but with brain reorganisation and are expressed mainly as alterations in cognition, thus affecting behaviour, social relations, neuromuscular regulation, learning and memory. The impact of these ‘milder’ neurological alterations in the quality of life cannot be overemphasized. Because they are of milder nature, they mostly go unnoticed in early months and even years of life.


Identification of foetal brain injury/reorganisation as early as possible is a major opportunity for public health. The problem involves thousands of families yearly. For the first two years of life, the growing brain has enough plasticity (the brain’s ability to respond and remodel itself) to bring back to normal deviations that occurred during intrauterine life. This has been defined as the ‘window of opportunity’ to revert the effects of in utero diseases on foetal programming.

Unfortunately, early diagnosis is still not possible in a substantial majority of cases. Much is still unknown about how a developing foetal brain adapts to and eventually deteriorates under adverse conditions. We need to improve the understanding and current diagnostic means of perinatal brain injury if we hope to start early interventions.

The list of foetal problems potentially leading to brain injury is large, but the majority of cases are caused by prematurity and intrauterine growth restriction (IUGR). Over the last 10 years the team in Barcelona has worked on both, but have focused more on IUGR as there was much less known about this disease and the opportunities for public health were greater.

Intrauterine Growth Restriction & Prematurity

IUGR is normally the consequence of placental insufficiency. The placenta is the organ that the foetus uses to obtain nutrients and oxygen from the mother. In a proportion of pregnancies, for a variety of reasons, the placenta does not grow properly and is not able to satisfy the enormous requirements of the foetus. In these circumstances, the ‘genetic program’ can not build the brain in the way it was supposed to, so that reprogramming, and consequently reorganization, must occur.

In prematurity, which is typically characterised by intrauterine infection, the baby is exposed to the ‘outer world’ when its brain is still in the critical construction phase. Changes in temperature, feeding, sound and light have, as of yet, unknown effects on the developing brain.

Cerebra Foetal Research Programme

The Cerebra Foetal Research Programme incorporates a variety of projects that aim to diagnose abnormal brain development in foetuses and new-borns, and implement specific interventions to prevent, or reduce its impact. The main interrelated research lines cover problems of maternal, foetal and neonatal health, and are summarised below.

Brain Connectivity

The main objective of this research line is to develop a quantitative imaging biomarker for early diagnosis of neurodevelopmental disorders based on the imaging of the brain connectivity (the way neurons connect the different brain areas). To accomplish that, different techniques of Magnetic Resonance Imaging (MRI) are being used, including diffusion, functional and anatomical MRI.

Neurological Programming (Microstructure and Metabolomics)

In this research line, the group focuses on identifying the structural (the way neurons and other cells are organised within the brain microscopically) and metabolic differences in the brain of foetuses and children that are diagnosed with growth restriction and are at risk of developing neurodevelopmental problems. This requires the development of new mathematical algorithms that will allow the interpretation of subtle brain changes that could be used as new biomarkers.

Diagnosis and Therapy in IUGR

This line of research aims to identify before birth, which babies with growth problems will have abnormal neurodevelopment. The majority of babies considered small in utero are naturally smaller and will face no future problems. However, a proportion of babies are born small due to problems with the placenta. These babies face neurobehavioral problems at birth that persist into childhood.

The Foetal Medicine Research Centre has developed non-invasive methods to measure how much blood reaches the brain, and have described that this is a strong marker of increased risk for neurodevelopmental problems. The prenatal identification of babies at risk is especially important because it would allow us to take preventive measures during pregnancy and early childhood.


The main objective of this line of research on prematurity is to advance our knowledge of the causes of preterm birth. Despite improvements in managing pregnancy, prematurity is still a common outcome and is the leading cause of perinatal morbidity and mortality. It is crucial to understand what triggers premature delivery so that we can prevent it and improve perinatal outcomes.

The Foetal Medicine Research Centre is trying to refine detection of patients at risk of preterm delivery as well as optimise the management and care of neonatal patients in the clinical level. The group hopes that the development of this research line will minimise needless intervention and over-treatment, streamline patient management and achieve the best possible results.


The main objective of the research centre is to reduce the number of instances of adverse neurodevelopment in children and adults and make a difference in their lives. An important contribution of the team to that extent is the implementation of their research findings into clinical practice through their involvement in the writing of clinical national and international guidelines.

The group is also committed to sharing and spreading their knowledge in maternal-foetal medicine with the general public. They have launched Inatal, the first social website directly related to a medical referral centre. Inatal is aimed to pregnant women with no pathologies but doubts and concerns, and provides objective, useful information about health issues while encouraging the active participation of its users.

In the Cerebra research programme 2008-2013, a multidisciplinary research programme for the evaluation of diagnostic techniques and intervention measures for prenatal brain damage using growth restriction as a model, the Foetal Medicine Research Centre has achieved significant advances in our understanding of brain injury of prenatal origin. They demonstrated that even milder forms of foetal growth restriction are associated with a high risk of neurological damage, improved current understanding and changed clinical management of one of the major cause of neurodevelopmental problems in children. However, as usual in research, discoveries have led to new questions, challenges and ideas for better ways to improve even further towards a real reduction in the number and magnitude of neurodevelopmental problems of foetal origin.

The next six years

Cerebra are delighted to be in a position to provide funding for the Foetal Medicine Research Centre at the University of Barcelona for a further 6 years (between 2014 and 2019) to continue the innovative and influential work in the area of perinatal brain damage.

Research Update – July 2014

Typing on a keyboard
A selection of recent news, research, reports and events

In the news

Cooling babies ‘helps reduce longer-term brain damage’
The BBC reports on a study that was published in the New England Journal of Medicine that suggests that cooling babies deprived of oxygen at birth improves their chances of growing up without disabilities such as cerebral palsy.

Possible pesticide link to autistic spectrum disorders
NHS Choices takes a look at the evidence behind a Mail Online article that reports “Pregnant women who live near fields sprayed with pesticides can run more than three times the risk of having a child with autism,”.

Male hormones in the womb linked to autism
NHS Choices examines the research evidence behind a Daily Telegraph article that states “Boys who develop autism may be exposed to higher levels of hormones…in the womb”.

Why children with autism often fall victim to bullies
This article in The Conversation, discusses the growing body of research that indicates that young people on the autism spectrum are considerably more vulnerable to bullying than their peers.

ADHD drug review call in Wales by Psychologists
BBC News Wales highlights a call by psychologists to review the drug treatment of children with ADHD in Wales, following a 57% rise in prescriptions for the most common drug to treat attention deficit hyperactivity disorder (ADHD) between 2007 and 2013.

Foundation for people with learning disabilities – An ordinary life
In a project led by the Foundation for People with Learning Disabilities, a number of technology-dependent children with complex health needs and their families from across the country who were benefitting from person-centred approaches were interviewed. These stories of the people were written up into a booklet for families and professionals called ‘An Ordinary Life’ and includes information on how to overcome some of the barriers to leading a full life.

More practical research needed on autism
Following the publication of a report by the institute of Education and Research Autism, asking ‘what should autism research focus upon?‘, the Guardian writes an article promoting the call for more research that influences autism services and societal issues.

New app relieved patients’ fear of the dentist
Scientists from Dundee and St Andrews Universities, NHS Tayside and Capability Scotland have developed a speech app ‘Stories at the Dentist’ to help people with learning or communication disabilities prepare for a visit to the dentist. This communication app helps patient deal with any anxiety or stress by helping them understand what to expect and get more involved in their care.


Peninsula Cerebra Research Unit – Research terms
Are you sometimes confused by research terms and what they mean? Peninsula Cerebra Research Unit (PenCRU) lists some of the terms used in research and provide an explanation of each.

Gene mutation linked to distinct type of autism
NHS choices reports on a genetic study that found children with autism spectrum disorder (ASD) were more likely to have a mutation in a gene called CHD8 than children without the disorder. However, talk of a single autism gene is premature. This is relatively early stage research. The genetic test will need to be further tested and validated in large and diverse groups to ensure it accurately identifies people with ASD.

iPads may help kids with autism develop communication skills
Medical Xpress reports on a study published in the Journal of the American Academy of Child & Adolescent Psychiatry that has shown that children with autism who use computer tablets as part of their language and social communication treatments may develop better speaking skills.

Researchers at the University of California gave 61 children aged five to eight with autism spectrum disorder (ASD) access to an iPad as part of their treatment. They discovered that the tablet had a positive effect on the kids’ communication skills. They did however emphasise that the iPad is just a tool and that for it to work, the children must use it in conjunction with treatment.

Epilepsy research uncovers ‘On-Off switch’ for brain
Epilepsy Research UK reports that scientists in the US have found a possible new method of toggling a person’s consciousness on and off, opening the door for new approaches to treating epilepsy.

A team from George Washington University uncovered a means of using deep brain stimulation to instantly send a patient with epilepsy into unconsciousness, before bringing her back again through the same method. According to study findings published in the medical journal Epilepsy & Behavior, it is thought that this technique could be explored as a potential means of resetting or correcting the uncontrolled and destructive brain activity that occurs during an epileptic seizure.

Autism the most costly disorder in the UK
In June, the London School of Economics and Political Science (LSE), published research that shows that that autism costs the UK £32.1 billion per year, more than heart disease (£8bn), cancer (12bn) and stroke (5bn) combined. The LSE estimates that autism costs the country at least £32 billion per year in treatment, lost earnings, care and support for children and adults with autism. This has led Autism charities to call for a greater spend on autism research in the UK, because we spend just £4m per year on autism research, as compared to cancer (£590m) heart disease (£169m) or stroke (£32m).

Autism is not the only neurodevelopmental disorder on the rise
Sfari reports on a study published in May in European Child and Adolecent Psychiatry, found evidence that the growing prevalence of autism is no different from that of other neurodevelopmental disorders. The results were based on data collected from more than 4.5 million people in four countries,

Ocular and visual status among children in special schools in Wales: the burden of unrecognised visual impairment

The high prevalence of visual defects among children with special needs is well reported and guidelines for vision screening are in place. However, recent research has suggested that vision care for such children is neglected. This study set out to evaluate the current status of vision screening and eye care in special schools in Wales and concludes that pupils of special schools in Wales are not receiving equitable eye care since screening is patchy.

Bullying experiences among disabled children and young people in England: Evidence from two longitudinal studies
Bullying among school-aged children and adolescents is recognised as an important social problem, and the adverse consequences for victims are well-established. Despite growing interest in the profile of victims, there is limited evidence on the relationship with childhood disability. Results from two longitudinal studies by the Institute of Education reveal an independent association of disability with bullying, suggesting an overlooked mechanism contributing to negative long-term outcomes among disabled children.

Limited motor skills in early infancy may be a sign of autism
Research reported in Science Daily announces findings that provide evidence for reduced grasping and fine motor activity among six-month-old infants with an increased familial risk for autism spectrum disorders.


Looking for an ordinary life
This briefing summarises findings about some of the current issues affecting children and young people with complex health needs (who may also be using medical technology) and their families. It is based on a development project funded by the Department of Health Voluntary Sector Investment Programme and carried out by the Foundation for People with Learning Disabilities.

From the pond into the sea
The Care Quality Commission have published a report detailing the findings from a recent review showing that young people with complex health needs do not always receive the necessary care and support when they move on to adult care services.

Mental health and behaviour – information and tools for schools
This is advice from the Department for Education. All pupils will benefit from learning and developing in a well ordered school environment that fosters and rewards good behaviour and sanctions poor and disruptive behaviour. This behaviour and discipline in schools advice sets out the powers and duties for school staff and approaches they can adopt to manage behaviour in their schools.

Bullying and the law – a report for schools
The anti-bullying Alliance has produced a briefing that provides information about bullying and the law for schools and the wider children’s workforce in England. It is particularly written in relation to children and young people with special educational needs and / or disabilities (SEND) but can apply to all children and young people.


National Autistic Society (NAS) – Girls on the autism spectrum

London – 9th October 2014 (Early bird rate if booked before 29th August)

The NAS is holding a conference aiming to further the discussion around diagnosis and support for girls and women with autism. Delegates can choose the seminars from three streams: health, social care and education. Dr Wenn Lawson (formerly Wendy Lawson) will be giving the keynote address at the conference on the unique challenges that women on the spectrum face and their unique strengths.

JLA childhood neurodisability research priorities – Top 10 published!

The James Lind Alliance

The James Lind Alliance

The James Lind Alliance (JLA) research priority setting partnership publishes its top 10 research questions that still need to be answered on the effectiveness of interventions for childhood neurodisability.

The aim of the James Lind Alliance Childhood Disability Research Priority Setting Partnership was to identify and prioritise unanswered questions about the effectiveness of interventions for children and young people with neurodisability from patient, carer and clinical perspectives.

Suggestions were gathered in an open survey, aggregated and framed as research questions, then checked against existing systematic reviews of research evidence to ensure they were unanswered. The topics were initially prioritised in a vote with stakeholders, and then discussed at a workshop by young people, parent carers and clinicians.

The final prioritisation workshop was held on 5 June 2014 at the Royal College of Paediatrics and Child Health in London. Participants in the workshop came from various regions of England.

There were three young adults with neurodisability, seven parent carers, three representatives from generic child disability charities (including Cerebra), a disability advisor in education, and eight health professionals (paediatrician, speech and language therapist, three physiotherapists, occupational therapist, nurse, orthopaedic surgeon). Three representatives from NIHR observed the meeting.

The group succeeded in prioritising the 25 uncertainties shortlisted from earlier stages, and a Top 10 was agreed. The Steering Group will meet again in September to review progress with our dissemination strategy.

To find out more about the work and all the topics considered and prioritised, please visit:


Research update – June 2014

UpdatepicA selection of recent news, research, reports and events.

In the news

Autism resolution passed at WHA Research

Autism reports that in an immediate board approval, the World Health Assembly (WHA) – the decision making body of the World Health Organisation (WHO) – passed recently a resolution regarding autism, placed by Bangladesh last year. The assembly urged member states to include the needs of individuals affected by autism spectrum and other developmental disorders in policies and programmes related to child and adolescent health and development and mental health.

Autistic boys exposed to higher levels of hormones in womb, study finds

The Guardian reports that research on children in Denmark has found that boys with autism were more likely to have been exposed to higher levels of hormones in their mother’s wombs than those who developed normally. The findings add to a growing body of evidence that the biological foundations of autism are laid down well before birth and involve factors that go beyond the child’s genetic make-up. The results may help scientists to unravel some of the underlying causes of autism and explain why boys are four to five times more likely to be diagnosed with the condition, which affects around one percent of the population.


Timing is everything: scientists control rapid re-wiring of brain circuits using patterned visual stimulation

In a recent study published in Science, scientists from Montreal Neurological Institute at McGill University and the McGill University Health Center show for the first time how the brain rewires and fine-tunes its connections differently depending on the relative timing of sensory stimuli. The researchers have been studying the formation of brain circuitry during development to better understand healthy brain wiring. They also hope such studies will lead to development of more effective treatments for nervous system injuries, as well as therapies for neurodevelopmental disorders such as autism and schizophrenia.

Twin study set to explore autism, attention deficit overlap

Sfari reports that a new Swedish twin study plans to search for the shared genetic and environmental origins of autism and attention deficit hyperactivity disorder (ADHD), which are often mistaken for each other. The new project aims to assess identical twin pairs using a variety of measures, including behavior and brain imaging. The researchers plan to compare the characteristics of the discordant twin pairs (meaning only one of the two has a disorder) with those of typically developing twin pairs.

Risk of brain injury is genetic

Researchers have identified a link between injury to the developing brain and common variation in genes associated with schizophrenia and the metabolism of fat. Scientists at the University of Edinburgh, Imperial College London and King’s College London studied genetic samples and MRI scans of more than 80 premature infants at the time of discharge from hospital. The study builds on previous research, and suggests that premature babies’ risk of brain injury is influenced by their genes, a study suggests. Researchers add that future studies could look at how changes in these genes may bring about this risk of – or resilience – to brain injury.

Clinical research: Angelman gene variants alter symptoms

Sfari provide a brief summary of a study published on 19 March in Research in Developmental Disabilities, which reports that the nature of the mutation that leads to Angelman syndrome, a disorder characterized by speech impairment and developmental delays, affects the disorder’s presentation.

Brain Methylation Map Published

The Scientist reports on research published on 4 July in Science that shows that epigenetic modification varies greatly over the course of development but is remarkably consistent between individuals and between mice and humans. Researchers at the Salk Institute in San Diego have made an extensive map of several types of methylation in the brains of mice and humans, hoping to understand the role of epigenetic changes in the brain as mental illnesses took hold in humans.


Sensory issues and autism: an insider’s guide

SEN provides a summary by Paul Isaacs that outlines some of the main sensory difficulties faced by people with autism and how they affect their everyday life.


Towards a Positive Future

A one-day annual national conference for parents of children with special educational needs and the professionals who support them. Central London, Thursday 19th June 2014.

Engage in their future National Conference

An exceptional programme of speakers and workshops will be delivered around the theme of ‘Improving life chances for children experiencing behavioural, emotional and/or social difficulties (BESD)’. Wyboston Lakes, Cambridge, Thursday 3rd and Friday 4th July.

Cerebra Perinatal Research Centre

father and sleeping babyWe take a look at how the Cerebra Perinatal Research Centre at Leeds University is making a difference in preventing neonatal brain injury and childhood disability.

For most mothers, awaiting the arrival of their baby is a safe and successful process, but we know that adverse outcomes can unexpectedly complicate one in five pregnancies. These outcomes include preterm (early, premature) birth, pre-eclampsia (high blood pressure), and low birthweight (growth restriction). Alone, or in combination, they may have serious consequences for the mother and/or her baby. Importantly, they are the leading causes of neonatal brain injury and later childhood disability (both cognitive and motor, ranging from poor academic achievement through to cerebral palsy).

Predicting which mothers are at risk and implementing preventive strategies would be ideal. However, identifying at-risk-mothers-to-be is difficult. To that extent, understanding of the underlying pathophysiology would enable targeted preventive solutions, but also lead to the generation of predictive tests and lead to successful change in the clinical setting.

Since 2007, and with the support of Cerebra, the Cerebra Perinatal Research Centre based at the University of Leeds has been engaged with identifying and disseminating effective and preventive strategies for adverse outcomes in pregnancy, through a research process that is outward-facing, collaborative, and transitional. They have established a research centre which has informed clinical practice, inspired multi-professional teaching and led to a reduction in one of the key adverse outcomes, preterm birth (over the period of Cerebra’s funding of the centre, this work has led to a fall in premature birth rates, with almost 350 fewer babies each year being born too soon).

The Cerebra Perinatal Research Centre conducts a varied programme of research that aims to prevent neonatal brain injury and childhood disability. The main focuses of the centre are four interrelated research themes that are summarised below.

1. Fetomaternal interface: Characterising normal and abnormal placental structure and function.
A healthy placenta is the key to an uncomplicated pregnancy, but our understanding of its structure and function remains limited. Each placenta reflects the environment its baby shared and, as such, has the potential to shed light on the causes of adverse pregnancy outcome. At present assessment of placental structure is confined to microscopic inspection. This yields a large amount of descriptive and qualitative information, but is limited in its ability to quantify abnormalities seen. By implementing innovative technology, researchers at the Cerebra Perinatal Research Centre have pushed these boundaries. Full thickness placental sections are stained, scanned and later reconstructed digitally. This allows targeted, large areas of the placenta to be surveyed with a view to make more accurate assessments. Furthermore, by using this digital platform the group is also able to capture sequential sections of the placenta tissue, virtually reassemble them and establish a 3D image, thus undertaking a comprehensive analysis of healthy and diseased placenta and compare for structural anomalies.

2. Early circulatory markers of pregnancy complications: Developing predictive strategies
The ability to predict at an early stage of pregnancy which expectant mothers would encounter complications later would allow intervention and preventing them from occurring. Such discovery research would also reveal new avenues for future exploration and enhance understanding of the mechanisms of both pregnancy complications and brain injury. To that extent the Leeds team is part of a worldwide collaboration: the Screening for Pregnancy Endpoints (SCOPE) biobank, which took over five years to complete. The wealth and depth of this biobank has been realised through over 100 SCOPE consortium-approved studies and has already led to 30 peer-reviewed publications. Most importantly it has led to the identification of PIGF (placental growth factor) as being the most important biomarker in the prediction of pre-eclampsia (high blood pressure during pregnancy). The group will continue to examine the role of potential biomarkers focusing on cell-free nucleic acids (microRNA and DNA) as markers of disease, due to their relative stability compared to many proteins. To that extent the centre has initiated the creation of a further local biobank the 1000 Women Study (an NIHR portfolio study) which will be used both in terms of establishing novel predictive tests, but also evaluate the reliability of those proposed elsewhere.

3. Maternal, fetal and neonatal immune function: Control, modulation and prevention of postnatal brain injury
The group has long had an interest in the role of immune system dysfunctions in the onset of major adverse pregnancy outcomes and the relationship between this and subsequent neonatal brain injury. Their focus has been on the major groups of cells involved in maternal immune defence, particularly macrophages, as it is becoming clear that these respond and behave differently in the mother and her baby, that they have different consequences dependent on their location, and that they were amenable to modulation. Researchers in the centre have developed and refined in vitro cell models to compare maternal and fetal/neonatal macrophage function. The group also carried out experiments to evaluate and characterise the effects these macrophages have on developing neurones, changes which may have long-lasting consequences. Scientists in the Cerebra Perinatal Research Centre hope that a better understanding of prenatal immune function, and how this evolves through advancing gestational age, birth and during early postnatal development, will also offer much needed insight into how brain development is affected by inflammation, and the ways in which the maternal, fetal and neonatal inflammatory/immune responses can be modulated and extrapolated to the clinical setting.

4. Systems biology: Towards the identification of novel therapeutic targets
The biological systems underlying pregnancy complications are complex, diverse and frequently interrelated. There are limitations of examining pathways and molecular interactions in isolation from each other, rather than considering the wider picture. To that extent the Cerebra Perinatal Research Centre is now implementing as systems biology approach to define the biological networks that characterise normal pregnancy and early neonatal life.

Supported by partnerships with Harvard Medical School and the newly established MRC-funded Medical Bioinformatics Centre recently awarded to the University of Leeds, the group has been able to create frameworks of interactions and identify key targets for novel therapeutic interventions (by applying mathematical formulas/algorithms and probability to represent complex biological functions).

The main objective of the Cerebra Perinatal Research Centre is to make a difference in the lives of expectant mothers and their children. Through collaborative, global, translational research they have made important advances in this aim, improving the prediction of mums at risk of early delivery and preventing it from happening, thus reducing the incidence and burden of brain injury acquired as a consequence of pregnancy complications.

To that extent, the centre’s research has always concentrated on ensuring effective clinical practice. Without successful implementation of research findings there will be no reduction in the numbers of babies born at risk of brain injury and later disability. Their work so far, focusing on preterm birth, has led to a sustained reduction in prematurity in Leeds and the expansion of the preterm prevention service at Leeds Teaching Hospitals Trust. They now have a tertiary service that runs two clinics each week for women at risk of preterm birth, and which receives referrals from all of Yorkshire and other centres within the North of England.

The group have always had several research students assisting on existing projects or initiating pilot studies. These include both undergraduate (BSc) and postgraduate (MD and PhD) students. It is these students that will ensure this work continues to influence practice and shape policy in the years ahead.

The next six years
Cerebra are delighted to be in a position to provide the core funding for the Cerebra Perinatal Research Centre at the University of Leeds for a further 6 years (between 2014 and 2019) to continue the innovative and translational work they do in the area of brain injury acquired through adverse pregnancy outcomes.

PenCRU Childhood Disability Research Summary

pencru2PenCRU conducts a varied programme of applied research that aims to improve the health and well being of disabled children and their families.

Over the last 6 years, between 2008-2013, Cerebra have provided the core funding for Peninsula Cerebra Research Unit (PenCRU), a research centre based at the University of Exeter Medical School. PenCRU conducts a varied programme of applied research that aims to improve the health and well being of disabled children and their families. The main aims of the unit are to:

  • evaluate the effectiveness of interventions in children with brain injury and neurological disorders
  • better understand the effect of interventions on the life experience of these children, their families and parents/carers
  • provide better, accessible information to families and people with brain injury and neurological disorders about the effectiveness of interventions.

Family involvement

PenCRU runs a family faculty, which consists of families of disabled children who are interested in the research taking place at the unit. The purpose of the unit is to involve families of children with brain injury and neurological disorders in setting the research agenda and enable active engagement of parents in all aspects of the research process. Parents in the Family Faculty have been involved in a range of activities; these include developing their own ideas for research topics, helping PenCRU carry out research in progress, and helping to tell people about the research taking place through plain language summaries of research and presenting at conferences.

PenCRU is looking to engage children and young people (C&YP) in research in the future and are investigating the possibility of establishing a C&YP faculty. In 2014 the unit will pilot some engagement with a small number of schools and hope to use the learning outcomes to apply to the development of a C&YP Faculty in the future and fully involve C&YP in research activities.

Research projects

During the funding period 2008-2013, PenCRU has used the core Cerebra grant to secure further funding to conduct a varied programme of research.

James Lind Alliance – Childhood Disability Research Priority Setting Partnership
The aim of the Childhood Disability Research Priority Setting Partnership (PSP) is to identify and prioritise the most important research questions in neurodisability from the perspective of families and clinicians. The Steering Group reviewed over 800 research suggestions, once duplicated issues and out of scope submissions were accounted for; around 60 research questions are going forward for prioritisation.

Children’s Outcomes Measurement Study (CHUMS)
A NIHR funded study examining which health outcomes should be measured by the NHS to evaluate services for disabled children.

The benefits and costs of peer support
This project is evaluating the benefits and costs of providing one-to-one peer support to parents of children with disabilities.

Eating and Drinking Ability Classification System (EDACS)
A NIHR funded project to develop a valid and reliable eating and drinking ability classification system for children with cerebral palsy.

Hospital communications
This study aims to improve communication between paediatric ward staff and disabled children when they have to spend time in hospital.

Measure aspects of autistic spectrum disorder in young children (MeASURe)
MeASURe is investigating tools used to measure aspects of autistic spectrum disorder, and how well these reflect issues of importance for patients and carers.

Evaluating sleep systems for children with cerebral palsy
This review will appraise evidence of whether commercially available night-time postural management systems reduce hip deformity in children with cerebral palsy.

Sleep systems for children with Cerebral Palsy
This pilot study will test a research design for assessing how night-time postural management equipment affects sleep, comfort, pain and deformity in children with cerebral palsy.

Evaluating an intervention for mainstream schools to promote children’s positive attitudes towards disability
This study aims to use a school based survey and a literature review to facilitate the development of an intervention/educational materials for mainstream schools.

Systematic review of school based non-drug treatments for ADHD
This study aims to review non-drug interventions delivered in schools for children with ADHD.

Systematic review: involving disabled children and young people as partners in research
This project aims to carry out a literature review to find out what is currently known about involving children and young people as partners in research.

Children and young people project
This work is looking at how disabled children and young people can get involved in research and PenCRU activities.

What’s the evidence?
‘What’s the Evidence?’ reports summarise what is known about the effectiveness of a number of treatments and therapies, to give families access to the best current evidence to help them make decisions about their children.

There is a wealth of useful information on the PenCRU website about what research is, how families can get involved in research and also Plain English summaries of some of the research conducted at the unit.


The next six years

Cerebra are delighted to be in a position to provide the core funding for Peninsula Cerebra Research Unit (PenCRU) for a further 6 years between 2014-2019, to continue the fantastic work they do building capacity in the area of childhood disability,  involving families in research and addressing research questions about interventions that really matter to families.

If you would like to read more about the research activities at PenCRU, their full 2013 Annual Report is available here.