Category Archives: Research

The Cerebra Family Research Group

torheadlineThe Cerebra 1000 families study will look at the experiences of families as they bring up a child with a learning disability and/or autism.

There is probably only one question in the field of intellectual disability (ID) and autism family research that has been answered pretty much beyond doubt.  Parents, especially mothers, raising children with ID or autism report more stress and mental health difficulties than other parents.

We wanted to explore this further and in January 2014 Prof Richard Hastings, based at Warwick University, was awarded research funding from Cerebra to carry out the first large scale and long term study to identify and understand family stress, its causes, strategies for coping adopted by families and the outcomes for all family members.

The Cerebra 1,000 families study will follow 1,000 families over a five year period.  Children between the ages of 4 and 11 years with an intellectual disability or autism will be recruited into the study shortly.  Data will be collected from both parents (primary and secondary parental caregivers) where there is more than one parent in the household, and from one parent only in single parent households.

Data collected will allow the researchers to address questions about parental well-being and the two way relationship between a child’s behaviour and parental well-being; why some parents report significant psychological stress and others do not (psychological variables and socio-economic variables); and how parents and children are affected by the transition from primary to secondary school.  In addition the study will focus on fathers of children with intellectual disability or autism and their psychological well-being over time and the positive and negative outcomes for siblings.

Cerebra is also planning a conference with the University of Warwick focussing on Mental Health in Children with Learning Disability and/or Autism.

When? – 4th June 2015

Where? – The Welcome Centre, Coventry

Who is it for? The conference aims to bring together researchers, practitioners, educators and organisations working with children with Learning disabilities and/or autism in the West Midlands. Parents and carers are also welcome.

What is it about? The conference provides an opportunity for sharing research information relating to mental health in children with learning disabilities and/or autism, understanding national developments as well as discussing the implications of Education, Health and Care Plans (EHCs).

Keep a look out for more information about the conference and how to book in upcoming newsletters!

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.

Research Conference Review

conferenceOn 7th October 2014 Cerebra held its Annual Conference at the Royal Society of Medicine in London. The conference looked at different ways to solve the problems faced by families in accessing services and support for children with complex needs.

The key message for the Conference was to look at practicable ways forward for service users to access services, as continual evidence and research shows that people face constant difficulties with this. Cerebra’s aim is not to make changes to the law but to look at ways of ensuring that service providers implement the law as it stands. Hopefully delegates feel that they enhanced their knowledge and understanding by attending our Conference.

With the exceptionally high calibre of speakers and the variety of topics covered the content proved to be informative to both professionals and parents/carers alike. All of the speeches were videoed on the day and will be available on our website soon.

The first section of the programme was entitled ‘Common problems faced by families of disabled children’. This part looked at the research that is being conducted by Cerebra’s Academic Chairs relating to studies into the experiences encountered by families in challenging services, the impact of socio-economic influences on disabled families and looking at the responses and strategies in meeting the needs of children with severe intellectual disabilities. The speakers included:

Professor Chris Oliver (Cerebra Centre for Neurodevelopmental Disorders, School of Psychology, University of Birmingham)

Professor Richard Hastings (Centre for Educational Development, Appraisal and Research, University of Warwick)

Dr Janet Read and Dr Clare Blackburn (Warwick Medical School)

Alison Thompson, a parent, who gave a powerful and very moving speech relating to her experiences of dealing with different service providers as a mother of child diagnosed with ADHD. You can read her presentation here.

After an amazing lunch, the second section of the programme related to ‘Moving Forward’. Here Cerebra was extremely lucky to secure as speakers:

Dr Maggie Atkinson, the Children’s Commissioner for England whose speech was aptly titled ‘We want to help people see things our way’. After having spoken to numerous disabled children, she urged the audience of the need to look past their disabilities and see them as wanting to be treated as every other teenager.

Nigel Ellis, Executive Director, Local Government Ombudsmen. He gave the audience examples of complaints that had been made to him that related to the failure of local authorities to provide children with the necessary services, of which education made up the largest area of complaints.

The final section of the day ‘Problem Solving’ comprised of talks given by:

Polly Sweeney who is an Associate Solicitor at Irwin Mitchell. She gave an in depth look at Part 3 of the Children and Families Act 2014

Professor Luke Clements who is the key force in Cerebra’s Legal Entitlements Research Project. He discussed at length the focus of this project and relayed to the audience some of the legal opinions that had been produced in a Digest of Opinions that related to CAMHS, school transport and NHS services

At the end of each of the three sections conference chair, and Head of Cerebra Trustees, Professor David Rose fielded questions from the delegates which gave them the opportunity to clarify matters arising from the speeches. These questions were answered in detail and made some very complex issues clearly understandable and produced some thought provoking answers.

In addition to the talks, there were a number of exhibitors at the event who included Irwin Mitchell Solicitors, Autistica, Firefly and Wizzybugs.

Along with these there were information stands from our Academic Chairs at: University of Barcelona, University of Birmingham, University of Cardiff, University of Leeds, University of Exeter, Cerebra Innovation Centre.

Cerebra would like to thank all of the speakers and exhibitors for giving up their time to join us on the day.  We are particularly grateful to have received sponsorship from the Big Lottery Fund and Irwin Mitchell Solicitors – their support made the conference possible.

Next year’s conference has been booked for Thursday 3rd December 2015 and will be at the Royal Society of Medicine again. Further details about this event will be forthcoming shortly.

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

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.

Prematurity

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.

Impact

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.

Big Lottery Fund Boosts Cerebra’s Conference

The Big Lottery Fund has given a grant towards Cerebra’s 2014 annual conference.

Big Lottery Fund logo

Big Lottery Fund logo

Everyone at Cerebra would like to say a huge thank you to the Big Lottery Fund, who have provided a grant of £9,900 towards the charity’s annual conference.

This year’s conference, taking place at the Royal Society of Medicine in London on Tuesday the 7th of October, focuses on ‘Problem solving’: accessing decent services and support for children with complex needs and their families.

This is a one day conference providing academics, practitioners, educators and carers with up to date, evidence-based information on the commonly encountered barriers experienced by disabled children and their families in accessing their legal rights and practical approaches to breaking these barriers down.

You can find out more about this year’s conference, along with previous conferences, by clicking here.

Thanks to this grant we are able to offer a reduced rate for families and students, and extend our early bird offer to the 31st of August. To book your place click here.

The Big Lottery Fund gives out millions of pounds every year to good causes, including community groups and projects that improve health, education and the environment. You can find out more about the Big Lottery Fund on their website.

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:

http://www.bacdis.org.uk/research/psp.htm

The Cerebra Centre for Neurodevelopmental Disorders

cerebra-centre-logoIn this article we outline the research being carried out at the Cerebra Centre for Neurodevelopmental Disorders at the University of Birmingham.

Over the last 6 years (2008-2013), Cerebra has provided the core funding for The Cerebra Centre for Neurodevelopmental Disorders, a research centre based at the School of Psychology at the University of Birmingham, headed by Professor Chris Oliver.

The aims of the centre for the first six years of funding (2008-2013) were:

  • to carry out longitudinal, cross syndrome data collection to describe and understand the genetic, physical, neurological, cognitive and behavioural characteristics of children and young adults with genetic disorders associated with neurodevelopmental disorders
  • to conduct exploratory and hypothesis-driven experimental research projects that seek to discover the causes of and effective interventions for behavioural, cognitive and emotional problems in children and young adults with genetic disorders, intellectual disability and autism spectrum disorder
  • to disseminate research findings of relevance to all children and young adults with neurological impairments, intellectual and developmental disabilities who show behavioural, cognitive and emotional problems.
  • To read more about the current and past research projects, please visit the centre’s project pages, or read their annual report on the Cerebra website.  In this video a researcher at the centre explains the impact their research has for children with neurodevelopmental disorders and their families.

    The next 6 years

    Cerebra are delighted to be in a position to provide core funding for the Cerebra Centre for Neurodevelopmental Disorders for a further 6 years (2014-2019). The research taking place will continue to focus on understanding and ameliorating the clinically and socially significant problems that are experienced by children with neurodevelopmental disorders and their families. The centre will focus on three areas of research:

  • refining the behavioural phenotypes of genetic disorders
  • understanding the causes of clinically and socially significant problems experienced by children with neurodevelopmental disorders and their families
  • developing an early intervention strategy to prevent the development of these problems.
  • Understanding and reducing sleep disorders in children with developmental delay

    Cerebra have awarded additional funding to the centre to conduct research that will describe and assess sleep disorders in three groups of children at the highest risk for severe and persistent sleep problems:

  • children with Angelman syndrome
  • children with Smith-Magenis syndrome
  • children with intellectual disability and autism spectrum disorder.
  • The contrasting nature of the sleep disorders will allow the project to:

  • identify critical points for intervention that are disorder-sensitive
  • compare and contrast the effects of different types of sleep disorders on parental wellbeing and physical health
  • develop and trial disorder-sensitive sleep assessment protocols
  • evaluate the effects of behavioural management in proof of principle studies
  • develop cloud and internet resources to facilitate assessment, sleep consultancy, intervention and dissemination.
  • The study of sleep disorders in these three groups affords the opportunity to describe the relationship between different types of sleep disorders in children and their relationship to disturbed sleep, stress, poor physical health and coping in parents. These research findings will be invaluable to inform the Cerebra Sleep Service.

    Further Inform Neurogenetic Disorders (FIND) website development

    Cerebra also co-fund a website project with the Economic and Social Research Council (ESRC), led by the Cerebra Centre for Neurodevelopmental Disorders, that aims to get these research findings about rare genetic syndromes to families and professionals quickly and effectively. The website is named ‘Further Inform Neurogenetic Disorders (FIND)’, and will be launched in September 2014. Keep an eye out for the launch!

    For more information on FIND and the services provided please click on this link to be directed through to the website:  http://www.findresources.co.uk/about-us

    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.

    Research

    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.

    Reports

    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.

    Events

    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.