Category Archives: Research

Living with Hemiplegia and Epilepsy

PoppyWe are asking for young people to write about their experience of growing up with and living with a disability to help us challenge negative perceptions and promote a wider understanding of different conditions. In this article eleven year old Poppy tells us her story.

“My name is Poppy and I have left-sided Hemiplegia and Epilepsy.  For people who don’t know what I have I will explain. Left-sided Hemiplegia means that you have a weakness on one side. Sometimes my arm does strange things. I use my left hand for steadying.  I also pick up the dice with my left hand when Mum and I are playing games. But otherwise I have difficulty using my affected hand and arm. I wear a lycra arm and hand splint to help stop my arm and hand from going everywhere.

My left leg has a high tone and that makes walking difficult. My left leg is also shorter than the right so I have a heel raise on my shoe. I wear a splint otherwise I cannot walk.

I had some surgery a few years ago because I could not walk at all then, because my foot was at an odd angle. I use a manual wheelchair sometimes if I get tired. I will be using a powered wheelchair around my new secondary school because it’s really big.

The type of Epilepsy I have is Focal Seizures. They are boring because you have to sit and wait for them to go away. This is what I think I look like.

I have to take medication twice a day but I still have seizures. My seizures make me feel woozy and I can’t think very well at school. Sometimes seizures upset my sleep and am awake during the night for hours so I am tired the next day.  My tummy feels odd too when I am having seizures and I go off food. I feel unwell for days before and after my seizures.

I like playing tennis with my Mum, which is good physiotherapy. I also have an adapted trike which I try to ride every morning before school, if I am feeling well enough. I love swimming but I haven’t been able to go for a while because of my seizures. I haven’t been able to attend my drama or karate clubs either because of feeling unwell. My seizures mean I miss out on lots of things. They are really annoying.

I was two when I got left-sided Hemiplegia, luckily I can’t remember anything. I was very poorly, and I could have died.  That is what Mum says anyway. I had E-coli and had to stay in hospital for seven weeks.

I got my Epilepsy when I was eight, when puberty started. So Mum thinks that my Epilepsy was triggered by puberty (which I agree with). I hope that means I will grow out of it. I really want to drive when I am older but if I still have seizures I won’t be able to.

I changed primary schools recently because I was having problems with friendships. It had been going on for a while. It made me feel like I was invisible. Now I am at a new school and it is better. I have nice friends. But I am told I am behind a lot and I need to catch up which stresses me out. Mum had a talk with school about avoiding saying I am behind because anxiety can trigger my seizures.

Hemiplegia doesn’t just affect my body though, it also has hidden effects – I can have difficulty processing information and with remembering. When I have seizures it affects these two aspects even more. Mum says I repeat myself a lot and get confused.

I have lots of hospital appointments and see lots of doctors and professionals. It’s really annoying. When they talk about surgery it upsets me and I feel worried.

I get up at 6a.m. every morning because I have a lot to do. I do daily physiotherapy and Occupational Therapy before I go to school and I practice washing and getting dressed, which takes a long time. I get really tired.

When I grow up I’d like to be an author. I’d like to have a family and be happy.”

If your child would like to write something for us we’d love to hear from you. Please contact Emma Thomas on

Why we need more fathers to take part in research

Mikeda Jess from The Cerebra Family Research Group at the University of Warwick explains why they need more fathers to take part in research.

“Research with families of children with disabilities contributes to a greater understanding of their experiences and the factors that have an impact upon their lives. Traditionally, when researchers make a call for families to take part in research it is often mothers that respond, completing surveys and answering questions about their child and family life.

Even in modern times, it is mothers who often assume the primary care-giving role and so they are well placed to speak on behalf of their family. Mothers are usually a fountain of knowledge regarding their child’s strengths, difficulties, and daily challenges and can talk about their family as a whole too. Mothers have made a major contribution to research and to our understanding of families of children with disabilities. Thank you!

Although sometimes they are, mothers are not usually the only members of a family living with a child with disability. There are often other children (siblings), another parent (perhaps a father), and extended family members (such as grandparents, step-parents, or aunts and uncles). In this article, our focus is on fathers.

Fathers often play a significant and distinct role in the lives of their children, but theirs is a significant voice often missing from family research. What this means is that we actually know very little about fathers’ perspectives and whether their experiences are similar to or different from those of mothers.

What do we know from research so far about fathers and mothers and whether they have similar or different experiences? Researchers that have included fathers have found (unsurprisingly) that they are different to mothers. For example, fathers tend to report fewer problems in relation to their psychological well-being than do mothers in families of children with disabilities. Fathers report less stress, depression and anxiety.

Why might fathers of children with disabilities report fewer psychological difficulties than mothers even within the same family? One answer is that across the whole population men/fathers tend to report fewer psychological difficulties than do women/mothers. Although this reminds us that families of children with disabilities are in many ways just like other families, it actually doesn’t explain why this difference is there.

There may be some additional clues in research with families of children with disabilities about why fathers report fewer psychological difficulties than mothers. For example, many mothers give up paid work to care for their child with disability whereas many fathers stay in work. Perhaps fathers have the advantage of more social contact with work colleagues and the benefit of a role outside of the home that gives them an additional sense of worth? In addition, mothers typically (though not always) perform most of the care-giving tasks for their child with disability. Thus, the strain of this work and perhaps the difficulties of dealing with (for example) any significant child behaviour problems, probably falls more onto mothers than fathers.

In the research of the Cerebra Family Research Group at the University of Warwick, we have also looked at families from a systems perspective. This means that we are interested in how the different members of a family affect each other. From this perspective, it is not just the child with disability that might have an impact on other family members, but family members may affect the well-being of the child with disability and impact on each other too. For example, in some research studies of families of children with autism we have found that fathers’ psychological well-being was more closely associated with the mother’s depression than it was with their child with autism’s behaviour problems. In contrast, mothers’ well-being was associated with both the father’s depression and their child’s behaviour problems. Again, this shows that fathers’ experiences can be quite different to those of mothers in families of children with disabilities.

Differences between mothers and fathers are evident, but our knowledge on why exactly that is remains limited. It is clearly very important that fathers get more involved in research. First, the voice of fathers is valid but often missing. Fathers offer an insight into their family life that is equal, but different, to other members of their family. Second, as researchers we are just as interested in the well-being and experiences of fathers as we are in the well-being and experiences of mothers. We want to know how best to support the men too!

Recently, we have launched the Cerebra 1,000 Families Study. We want to hear about the experiences of families raising a child with learning (intellectual) disabilities including children who also have autism. For the reasons outlined in this article, we are very keen to hear from two adults from the same family, ideally a mother and a father. People having an additional parental caregiving role in families (apart from the mother that is) are not always fathers and so grandparents, step-parents and adult are also welcome to participate in our study. Our aim is to collect information from 1,000 families. So far we’ve had a great response so a big thank you to all who have taken part.

We need to hear from fathers too and from more families! If you have already taken part and you have a partner or any other family member who helps you take care of your child please do encourage them to take part in the study. You can find the survey online or alternatively request a paper copy. Follow us on Twitter and become our friend on Facebook.

Get involved in making this the largest UK study ever of families raising a child with a learning disability so that there is a better understanding of families like yours.”

Find out more about the project here

Disabled Facilities Grant – Arthur’s Story

disabled facilities grants

Public bodies in the UK have certain duties to provide health, social care and other services for disabled children. Sometimes, however, families can experience difficulties in accessing these support services. Our LEaP Project team aims to provide free legal advice to families who need help getting the right support for their children.

The project publishes an annual round-up of some of the cases the project has helped with, called a Digest of Opinions. One of those cases is that of Arthur whose parents asked for help concerning a disabled facilities grant.

Arthur is 3 and has Autism, Global Development Delay (GDD) and a range of associated, complex medical conditions. Arthur has undergone various medical assessments at a children’s hospital and the clinicians have stressed the need for adaptations to Arthur’s home; in particular to his bedroom. Arthur’s parents requested an assessment from the local authority to enable the adaptations to be undertaken. The local authority advised that there is a standard delay of six months before assessments can be undertaken and an even lengthier delay in completing any works.

The legal opinion provided by the Project explains that the local authority is under a duty to assess within a reasonable time and to provide disabled facilities and adaptations (if they are necessary) within a reasonable period. Interim support should be provided, pending the assessment and provision of facilities and/or adaptations.

The full case Report can be found on page 4 of the Digest of Opinions. All the young people’s names have been changed. The opinions are a statement of the law and policy at that time – it should be remembered that the law does change.

LEaP is an innovative problem-solving project that helps families of children with brain conditions cope with the legal barriers they face. We listen to families and help them get the knowledge they need to access health, social care and other support services. We identify the common legal problems that prevent families getting access to services and we develop innovative ways of solving those problems. We aim to reach as many families as we can by sharing our solutions as widely as possible.

Read the Project Guidelines to find out more about the type of legal problems we can help with. If you would like to ask for support from the project please fill in the Online Request Form. If you would like further information, please contact us at or on 01267 242582.

New look for Cerebra’s Legal Advice Project

We are launching a new look for our Legal Advice Project which provides practical solutions to the legal problems families face.

Our Legal Entitlements Research Project has been going from strength to strength since it started in October 2013 and we’ve learned a lot about the problems parents face in getting access to services for their children.

The past few months have been a particularly eventful time for the project. Professor Luke Clements, who runs the scheme, recently moved from Cardiff University to a new post as Professor of Law and Social Justice at the University of Leeds. We’re delighted that the project will continue under Professor Clements’ direction at Leeds, which has a pioneering Centre for Disability Studies (CDS), bringing together scholars from a range of academic disciplines across the University. You can read more about the University’s ground-breaking work in a Disability News Service article. We’re grateful to colleagues at Cardiff University for all their hard work and commitment in establishing the project and we look forward to having other opportunities to work together again in future.

We’ve also welcomed a new Research Assistant to the team at Leeds, Sorcha McCormack, who will be working with Professor Clements to develop the project.

In light of these developments, we feel that this is the perfect time to relaunch the project with a new name – the Legal Entitlements and Problem-Solving (LEaP) Project. We’re committed to providing practical solutions to the legal problems families face and we wanted our new name to reflect our problem-solving approach. The project is all about making research relevant to families in their everyday lives.

We’ve also launched a new look website, with links to our Problem-Solving Toolkit, template letters, parent guides and other resources. We aim to add more resources to the site as the project develops. Our goal is to help parents get the legal information they need to address problems in getting access to services.

If you want to learn more about the scheme, have a look at our updated Project Guidelines. If you’d like to ask for help, please fill in our online form.

We’re always looking for new ways of sharing legal information with with families – if you have any suggestions, please contact us at

Dr Eduard Gratacós – Why health starts before birth

Dr Gratacos

Our research team at the University of Barcelona looks at identifying deviations in foetal brain development as early as possible to help prevent and/or minimise childhood disability.

Dr Eduard Gratacós explains his journey into research and why he believes that health starts before birth:

“I was trained in Obstetrics & Gynecology in the early 1990s. Soon after starting my medical residency, I found two new worlds I was not aware of, the fetus and research. Two discoveries that changed my ideas about what I wanted to be in my professional life.

Concerning fetal life, I had always thought that Obstetrics was just helping women to deliver. It struck me to realise that inside the mother there was the infinite world of another patient. Twenty-five years ago this concept was still quite new. Ultrasound had just revolutionised pregnancy follow-up. The mystery of what was happening inside the womb, hidden for all the history of medicine and humanity, was now becoming visible, and in real time! We were just in the beginning, but it was so amazing to think about the fetus as a patient, just as a child or an adult was. This notion impressed me so profoundly that I decided to dedicate my career to fetal medicine.

Research was my second discovery. During medical school, my ideas about me in the future were of a surgeon spending most of his day performing complicated operations. Just a few weeks after I became a resident, I started collaborating in research projects, and this quickly transformed the way I saw things. I suddenly realised that medicine existed thanks to research. The concept that you could create new knowledge that could eventually change the lives of people was amazing. It seems so obvious but you can study medicine for years and rarely think in these terms. Within a few months I was completely decided to dedicate my professional life to research.

So I ended up as a clinical researcher in fetal medicine. I first did my PhD in Barcelona and then moved to Belgium for a few years, where I had the privilege of joining one of the groups that pioneered fetal surgery in the world. When I came back to Spain in the early 2000’s I started a fetal medicine and surgery program. Over these years, we grew from a very small group of enthusiastic young people to a renowned international research centre with more than 75 people and one of the greatest scientific output in fetal medicine. I think our main findings can be summarised in one sentence: health starts before birth. The way our brain and heart will work during our lives is largely influenced by the life conditions in our mother’s womb. Pregnancy complications like preterm birth or fetal growth restriction may affect as much as one in ten pregnancies, and these fetuses and future children will be more prone to suffer neurodevelopmental and other health problems. We are looking for ways of reducing the burden of these pregnancy complications.

We have been supported by Cerebra for the last 13 years. We first demonstrated how children born preterm or with growth retardation had more neurodevelopmental problems. We later showed that ultrasound and magnetic resonance imaging were useful to understand how these problems occurred, and could help to identify those fetuses and babies at highest risk. Some of our research findings have been incorporated to current clinical practice. For instance, most medical societies recognise that brain Doppler must be used to identify and timely deliver fetuses with late-onset growth restriction. This change in clinical practice may benefit thousands of women in the UK, and hundreds of thousands in Europe and the world. In our current Cerebra research program we are investigating interventions that could protect the fetal brain and limit the consequences of brain injury. We also hope to demonstrate how maternal well-being is related with fetal and child neurodevelopment, and how we could provide tools to foster healthy brain development in utero.

Disease is part of nature. We as humans have the privilege and the capacity of investigating disease to understand it and trying to counter its effects on individuals. It may be hard for those suffering a disease to learn that research is so expensive and that it often takes a long time to achieve results that effectively improve things in “real life”. However, when we see where we are every ten years, we realise the impact of research. We must continue on this enterprise, for us and for the future generations.

Cerebra invests large amounts in promoting research and it does that in the most effective manner. With a policy of funding ambitious research programs for long periods, Cerebra allows researchers to undertake projects with a much higher chance of leading to real improvements. I think all Cerebra members, associates and supporters must be extremely proud and reassured that they are investing their money wisely and in a way that will change the life of many people in the future.

Cerebra has been with me for a substantial part of my research career, and I am extremely grateful and honoured for that. I hope that we can still do many important things together in the future. Thank you very much”.

Dr Gratacós is Professor of Obstetrics and Gynaecology and Director of the BCNatal national and international referral centre in Maternal Fetal Medicine.

This article is the latest in a series written by our Academic Chairs:


Chris Oliver – My Journey into Research: the Boy at the Pillar

Professor Chris Oliver explains his journey into research as well as the pioneering work of the Cerebra Centre for Neurodevelopmental Disorders.

“In 1981 I was training to be a clinical psychologist at the University of Edinburgh when the seminal documentary “Silent Minority” was aired on ATV. The content was a damning portrayal of abuse and inadequate service provision for children and adults with intellectual disability and was to prove more influential in driving reform than any government report of the day or since. One image in the documentary that has remained with me to this day was of a young boy tied to a pillar on the ward of a Victorian long stay hospital. The reason given for him being tied was that he banged his head very severely and this was how his behaviour was contained. After watching the documentary I made an unspoken commitment to the field of intellectual disability and considered careers in advocacy or clinical service. As I learned more about the field, it became clear to me that one part of the problem that underpinned poor service delivery was a lack of knowledge about how people with the most severe disabilities and difficult behaviour might best be supported and what interventions might decrease disabling behaviours such as self-injury.

Months later I was interviewed for a PhD position at the Institute of Psychiatry by Prof. Glyn Murphy, now at The Tizard Centre. After the interview she showed me around the treatment unit that I would work in for the next 12 years. As she did so, she espoused the same outrage at the documentary that I had felt but also spoke of how scientific method might inform our understanding of the behaviours that the boy at the pillar was showing. The combination of Glyn’s social conscience, scientific rigour and diligence was as inspiring to me now as it was then. Under Glyn’s tutelage, I was encouraged to understand fundamental causes of behaviour from different perspectives and develop new assessment and intervention methods that could be used in clinical practice.

Fast forward thirty five years and my programme of research still focuses on the same behaviours that I began to understand as a raw PhD student. With funding from Cerebra, my research team has been able to describe how genetics, brain development, medical conditions, cognitive profiles, emotion regulation and the environment each contribute and interact to cause difficult behaviours in children and young adults with intellectual disability. We have also tackled new areas such as sleep disorders, overeating, repetitive behaviour, and autism in genetic disorders. We have learned how pain, difficulties with communication, cognitive difference, impulsivity and sensory sensitivity can influence behaviour and we are developing new assessments to ensure these areas are attended to.

The 35 years that have flown by have been characterised by themes that stayed with me from my time as a PhD student. A prominent theme is that I have continued to work with students and postdoctoral research fellows who speak of and are driven by their social conscience, however derived. It is unfashionable in science to mention such a thing but not for us. A second theme has been the licence to study and research fundamental causes of behaviour and generate new information about how behaviours might be treated effectively. This opportunity provided by Cerebra is invaluable and contrasts with the majority of funding opportunities that focus on confirmation rather than innovation and force researchers to pose less ambitious questions rather than break new ground. A third theme has been a commitment to robust evidence and the importance of scientific method or “Data not Dogma” as a friend once printed on a t-shirt for me to celebrate the award of my PhD.

Since we opened the Cerebra Centre in 2008, 40 doctoral students have passed through its doors, each contributing in a unique way to what we know and do. The way we approach self-injury, sleep disorders, repetitive behaviour and a multitude of other problems is very different now to how it was when I watched “Silent Minority”. Further research challenges await us, such as deepening the understanding of the most severe self-injury and intractable sleep disorders, but in the last eight years we have generated a raft of research findings and there are 40 more people with doctoral degrees who can rise to these challenges and that’s got to be a good thing. However, one thing that has not changed is the reluctance of government to convert research findings into mainstream practice. I was reminded of this in 2011, when the BBC screened a Panorama documentary describing abuse and inadequate service provision at Winterbourne View. My mind returned then to the boy I had seen at the pillar, thirty years before.

I have learned two important lessons on my unfinished research journey. The first is that with determination, data and diligence, combined with a team blessed with more than their fair share of smarts, it is possible to change the most difficult behaviour, for most people, for most of the time. The second thing I have learned is that to change the behaviour of government, then in the words of Chief Brody, “You’re gonna need a bigger boat”.”

Prof. Chris Oliver, Professor of Neurodevelopmental Disorders at the University of Birmingham and Director of the Cerebra Centre for Neurodevelopmental Disorders.

What’s Your Story?

At Cerebra we believe in listening to the families we support and working with them to develop and share information and knowledge.

We are building a resource of blogs or articles written by young people themselves to help us challenge negative perceptions and promote a wider understanding of different conditions.

We are looking for young people to write about their experience of growing up with and living with a disability (parents can help if needed). The article can be about anything they like as we want this to be a chance for young people to write about what is important to them as an individual. The stories will be then collected together to form an information pack, as well as being published as individual blogs in our newsletter and on our website.

Our first story was written by Mair Elliot, who was diagnosed with autism aged 15. You can read Mair’s story here.

If your child would like to write something for us we’d love to hear from you. Please contact Emma Thomas on

Mental Health and Well-being Conference Write Up

Improving Mental Health and Wellbeing for Young People with Autism, ADHD and Learning DisabilitiesOn the 28th April 2016 we held our Annual Conference at the Royal Society of Medicine in London on ‘Improving Mental Health and Well-being for Young People with Autism, ADHD and Learning Disabilities’.

Our aim is to make sure that the needs, and voices, of young people with these conditions are not lost in the current discussion surrounding mental health.

With the exceptionally high calibre of professional speakers, including a number of young people and the variety of topics covered, hopefully delegates felt that they enhanced their knowledge and understanding by attending our Conference.

The first session of the Conference was ‘Risks to mental health and well-being in children and young people with a neurodisability’. This part looked at the current research that is being conducted around genetic and biological causes of mental health disorders, mental health problems in children with intellectual disability and co-occurring psychiatric disorders in children with Autism Spectrum Disorder. The speakers in this session were:

Dr Andrew Cuthbert (Institute of Psychological and Clinical Neurosciences, Cardiff University)

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

Professor Emily Simonoff (Institute of Psychiatry, King’s College London)

After a superb lunch, the keynote address centred on ‘Mental Well-being and involving young people in defining the agenda’. This presentation was given by:

Dr Cathy Street (The National Children’s Bureau), accompanied by Jack Welch and Kiri Joliffe (NCB Young People Advisory Group)

This session focused on the benefits of children and young people’s involvement and participation in mental health and a short video was shown where young people talked about what it means to grow up happy. Both Kiri and Jack spoke, very bravely, of their own experiences of living with mental health issues and autism. They also stressed the importance of listening to young people.

Following a short break, the final session ‘Working to improve mental health and well-being’ comprised of talks given by:

Mair Elliot

This remarkable young lady gave an extremely powerful and moving speech about her own experiences of living with autism, mental health issues and psychosis.

Dr Jane Waite (Cerebra Centre for Neurodevelopmental Disorders, University of Birmingham)

Jane looked at how to spot the signs of anxiety disorders and effective interventions.

Dr James Cusack (Autistica)

James provided an update on the research projects that the charity are currently funding into mental health in autism.

Professor Tasmin For and Dr Astrid Janssens (University of Exeter Medical School)

Tasmin and Astrid gave details of a new project focusing on what happens to young people with Attention Deficit Hyperactivity Disorder (ADHD) in transition from children’s services to adult services which will use national surveillance, qualitative and mapping studies.

At the end of each of the sessions the Conference Chair, Professor Stuart Logan (Cerebra Professor of Paediatric Epidemiology, PenCRU at the University of Exeter), fielded questions from delegates which gave them the opportunity to clarify matters arising from the presentations. The speakers were able to answer these questions clearly and make the subject matter understandable.

You can watch the Q&A sessions here.

Additionally there were a number of exhibitors at the Conference who included Leigh Day, Hyphen Law, Tomcat, A Stitch Different, The Clarity Partnership, Autistica and The Challenging Behaviour Foundation. Alongside these there were information stands for our Academic Chairs at: University of Birmingham, Cerebra Innovation Centre, University of Exeter, University of Leeds and University of Warwick. Information was also available regarding our Family Research Ambassadors Projects.

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:

  • Leigh Day
  • Foot Anstey
  • Hobbs Rehabilitation
  • Lyons Davisdon
  • Hyphen Law
  • Tomcat
  • Autistica
  • The Challenging Behaviour Foundation
  • A Stitch Different Community Group
  • The Clarity Partnership

What’s The Evidence? reports

The Peninsula Cerebra Research Unit (PenCRU), ‘What’s the Evidence?’ reports are an an ongoing series of short reports that seek to summarise what is known about the effectiveness of a particular treatment or therapy. These reports are a synthesis of existing research and are not new studies that have been carried out. They are written in responses to queries from families about specific therapies and treatments. These evidence summaries are intended to help families make informed decisions about treatments and therapies for their children’s health care. The team produce reports about both NHS and complementary or alternative therapies.

To find out more click here.

Mr Nigel Simpson: My Journey into Research

Nigel Simpson

Nigel Simpson

For most mothers pregnancy is a safe and straightforward process but for 1 in 5 unexpected complications can occur and are a major cause of childhood disability. Our research team at the University of Leeds, headed by Mr Nigel Simpson, focuses on understanding the causes of these complications and aims to predict and stop them from happening.

In this article Mr Simpson explains his journey into research.

“Maternity is a fast-paced, exciting, highly rewarding place to work in. When I started as a junior doctor I quickly recognised that once labour started safe delivery of the baby was my priority, but many other issues appeared beyond my control. These arose in three areas: when delivery came too soon (preterm or premature birth), when the size of the baby was less than expected (low birthweight), and when the mother had life-threatening high blood pressure (also known as pre-eclampsia). In all, 1 in 5 first-time mums encountered one of these three problems. The factors causing these complications were poorly understood and usually appeared unchangeable, with no therapies available to prevent them happening.

When I subsequently worked for six months within a neonatal unit I then saw the short and long term consequences for these babies and their families, in particular the likelihood of brain injury. It struck me at that time that our responsibilities for the mother and baby in pregnancy needed to extend to the prediction and prevention of these adverse outcomes rather than to simply react to their happening.

During my training I applied for a research post in Canada and spent two years investigating the monitoring of babies’ well-being in pregnancy (ie how we could make sure they were well before and during labour, and when we should prepare for a planned birth) and also the development of the placenta (afterbirth) in early pregnancy, and recognised that events occurring early on in pregnancy would be an important predictor of well-being later.

When I returned to the UK I then began to focus on the prediction and prevention of these complications. At the centre of my work were the links between research, teaching, and clinical practice, and the importance of each informing the other. In the research field, automated analytic technology, the sequencing of the human genome, and improved computational power offered major opportunities for progress but required collaboration with funders and the participation of expectant mums in order to acquire the large numbers of samples required to prove that the potential breakthroughs from smaller, laboratory-based projects were applicable in the clinical situation.

Cerebra’s sponsorship ensured that we were able to contribute to the world’s largest pregnancy biobank (SCOPE), in which seven maternity centres asked first time mums in early pregnancy if they were willing to give a small blood sample along with lifestyle information, and then for researchers to collect information about how the pregnancy had progressed. We successfully followed over 5500 mums in this way. The samples collected have given an invaluable insight into the factors that can predict pregnancy complications. The paper which we then published in 2014 was selected as the top clinical science paper that year by the journal Hypertension. This work, together with further national clinical studies we were involved in studying mums later in pregnancy, led to the identification of a biomarker called placental growth factor (PlGF) as being highly predictive for early delivery of the baby in at-risk mums. Its use in routine clinical practice is currently being evaluated by NICE, and should make sure that doctors and midwives are more able to accurately identify mums needing additional support whilst at the same time reassuring others who are not actually at additional risk. We have also just completed a five-year global study investigating the genetic basis for pre-eclampsia, and it is again likely that these findings will form the basis of future predictive tests and enlarge our understanding of factors causing conditions like pre-eclampsia.

Throughout these long-term studies, in the laboratory we have also been investigating the mechanisms causing these complications. In conjunction with researchers from Harvard we have been able to begin to unpick the inflammatory pathways causing preterm birth using new methods of analysing large and complex datasets – a new field called bioinformatics or systems biology. This will give a better understanding of further predictive tests as well as the best approaches to prevent preterm birth.

One of our PhD students is studying the make up of the cervix (neck of the womb) and how this alters in mums more likely to deliver early. This work fits in nicely with a national study we are part of which is trying to determine which type of suture material we should use to reinforce the cervix to prevent it happening in these mums (C-STICH). These studies were highlighted in a recent NIHR online course which explained the importance of clinical research studies. One of our other PhD students, using unique digital imaging techniques pioneered here in Leeds, has been understanding the mechanisms causing the placenta to fail in pregnancy and lead to later problems like low birthweight babies.

In addition to these large international studies we have continued to look carefully at our local mums to understand how lifestyle can affect pregnancy outcome. Unsurprisingly, it is clear that a balanced diet, together with healthy lifestyle and regular midwife visits are very important for healthy outcomes – although not totally protective for all complications.

All of this knowledge and experience helps us deliver more effective care for the mums coming through our maternity unit. Leeds was one of the first hospitals in the country to set up a preterm birth prevention clinic, which now looks after over 300 at-risk mums each year. Our rate of preterm birth has fallen in Leeds (in distinction to national and international trends), and we have been encouraging the development of other clinics in different UK cities through a national network, offering training, research, and practical advice to clinicians and midwives.

Working in partnership with Cerebra has helped us achieve these goals, and we trust, will help us achieve more in the years to come”.

Mr Nigel Simpson is a Consultant Obstetrician and Gynaecologist at the Leeds Teaching Hospital NHS Trust and Associate Professor at the University of Leeds. He is also a National Lead for the NIHR Clinical Research Network
for Reproductive Health & Childbirth.

You can find out more about the work of our Leeds research team here.