Category Archives: Information and Advice

Understanding and Reducing Sleep Disorders in Children with Developmental Delay

Dr Caroline Richards and Professor Chris Oliver from the Cerebra Centre for Neurodevelopmental Disorders talk about the Sleep Project which aims to understand and reduce sleep disorders in children with developmental delay.

Why is the Sleep Project important for families?

Sleep is a universal phenomenon, influencing almost every human activity. We need good quality sleep in order to learn new information, pay attention to the world around us, and store memories effectively. Sleep influences our mood, how hungry or full we feel, as well as fundamental biological processes such as cell development. Given the wide-reaching impact of sleep, it is not surprising that poor sleep has a significant negative impact on people.

Unfortunately, short and disrupted sleep is common in children with neurodevelopmental disorders. Children with autism, intellectual disabilities and a variety of rare genetic syndromes are at greatest risk of experiencing the negative consequences of poor sleep. What’s more, these children may already find learning new information, maintaining attention and regulating mood and behaviour very difficult; compromised sleep in these groups is therefore a huge concern.

Despite this great need, research on sleep in children with neurodevelopmental disorders is sadly lacking. We know the least about sleep in the children for whom sleep is arguably most important. The Sleep Project, conducted by the Cerebra Centre for Neurodevelopmental Disorders will change this. We lead cutting edge research to understand the different types and causes of sleep problems in children with neurodevelopmental disorders, identifying how poor sleep impacts on children and their families and trialling new interventions to reduce sleep problems more effectively.

What progress has the Sleep Project made since Cerebra began to support it?

Projects: We have completed five core components to date.

  1. We have conducted a large scale interview study, speaking with fifty parents and carers of children with Angelman syndrome (a rare genetic syndrome associated with sleep problems) to identify their concerns and priorities in sleep.
  2. We completed a cross-syndrome sleep survey with over 190 children with Angelman syndrome, Smith-Magenis syndrome, tuberous sclerosis complex and autism spectrum disorder. This provided robust evidence of syndrome specific sleep problems and unique pathways to sleep disturbance. We found that knowing the cause of a child’s neurodevelopmental disorder is essential to ensure accurate understanding of their sleep problem.
  3. We have completed the largest direct study of sleep using Actigraphy in children with Angelman syndrome, Smith-Magenis syndrome and Autism Spectrum Disorder. In this study over 100 children wore sleep trackers (Actigraphs) for a week, to provide direct evidence of their sleep-wake cycles. This resulted in the, largest, most robust international data on sleep patterns and the daytime impact of poor sleep in these rare groups.
  4. We have collected novel night-camera video data on children in the Actigraphy study and are analysing these data to better understand what children do when they wake up. We will use our understanding of waking and settling behaviours to develop more tailored interventions for sleep.
  5. Finally, we have conducted an in-depth study of sleep and parental stress, through collecting Actigraphy, self-report and bio-marker (cortisol) data from parents of children with neurodevelopmental disorder. This will enable us to quantify the impact of children’s poor sleep upon parents and carers.

Families who have taken part in these studies have received detailed individualised feedback reports, and the results of these studies have been published or are in review at leading academic journals.

Public Knowledge: A key aim of the sleep project is to ensure that as we improve scientific understanding of sleep in children with neurodevelopmental disorders, we simultaneously share that information with families, clinicians and educators. Research traditionally takes 10 to 17 years to influence real world practice – that is an unacceptably long time. We are committed to reducing this lag. In addition to publishing our research in high-impact academic journals and speaking at scientific conferences, we provide regular talks on sleep to inform and update parents and professionals. These have included talks at schools, parent support conferences, national professional networking events and large public conferences such as The Autism Show.

In addition to this, we co-produced a Sleep Guide for parents, in partnership with Cerebra which is freely available via Cerebra’s website.

The guide explains how problems with sleep may develop, the specific nature of sleep problems in children with rare genetic syndromes, how to assess sleep problems, and how to intervene to improve sleep. Alongside the guide, we also co-produced brief Sleep Cards to be used by Cerebra’s Sleep Service. These provide bite-size chunks of information on sleep interventions that the Cerebra Sleep Practitioners can give to families they are working with, to help parents and carers to implement evidence-based sleep interventions.

We have also launched new sleep content on our dissemination website: Further Inform Neurogenetic Disorders (FIND). The site has had over 14,000 page views since it was launched and continues to attract a high rate of hits. The sleep section on FIND contains accessible information on topics such as: current sleep knowledge, why it is important to investigate sleep in people with genetic syndromes, what interventions are available for sleep and the sleep research that we have been conducting.

Investing in People: The Sleep Project will increase expertise in Sleep Research in the UK. Through the first four years of the project, we have trained two PhD, seven Clinical Doctoral, three Masters and 10 Undergraduate students. The majority of these students are now working in either research or clinical psychology and therefore this investment in training has increased UK expertise in sleep problems in neurodevelopmental disorders.

What will be the longer term impact of the Sleep Project for families?

The long term goal of the Sleep Project is to improve sleep outcomes for children with neurodevelopmental disorders, ensuring that they have the same opportunities to thrive in life as their typically developing peers. With sustained funding, the Sleep Project will ensure that children with neurodevelopmental disorders have access to tailored assessments and timely interventions to ensure the best quantity and quality of sleep for them and their families.

You can find out more about the Sleep Project here. You can also find out more about the work that the Cerebra Centre for Neurodevelopmental Disorders does here.

Accessing Public Services Workshops for Professionals

Following on from the huge success of our Accessing Public Services Workshops, we are launching sessions specifically for professionals.

The workshops run from 10am -2pm and will help professionals to use our Accessing Public Services toolkit, helping to solve any difficulties families may be having with statutory agencies.

While UK law provides powerful rights to accessing health, social care and education support services, the law can be complicated and difficult to understand.  This workshop can support you by unpicking potential problems and giving you the tools you need to resolve them. Case studies from our LEaP project are used to help develop effective strategies to access services that families need, which are reinforced with a number of template letters to help challenge decisions made by public bodies. Ultimately, it is not in the interest of public bodies to have these commonly occurring problems and that most of these are capable of being resolved without great expense to those involved.

All of our workshops have been accredited by the CPD Certification Service. This means that our information workshops have reached the required Continuing Professional Development standards and benchmarks and that the learning value of each has been examined to ensure integrity and quality.

To find out more or to book a workshop please contact derekt@cerebra.org.uk

For further information or to book a workshop, contact Derek Tilley at derekt@cerebra.org.uk.

Adapting life – a family’s story

One of our families has written a blog post about the many adaptations families with children who have disabilities have to make.

“Several years ago we were referred for an assessment by an OT to look at possible adaptations we might need to our house to make things more suitable for the girls needs then and in the future. We were in fairly uncertain times with no clear idea of which way things would go health wise, so it felt like we had to consider advice from any professional willing to offer it.

Following her assessment there were some fairly obvious things that were going to make a tangible difference once completed, like an easily accessible shower with a seat to rest weary legs. Level access to the property for wheelchair access and to prevent trips and falls when crossing the threshold. There were also some that came as a shock! Had we thought about how to get upstairs as things got worse? Would our stairs be suitable for a stairlift or if needed could we accommodate a through floor lift? These weren’t the conversations we ever thought we would be having.

As it happened she was a tad over zealous and the larger adaptations, thankfully, have never come to fruition……and breathe. But it certainly adapted our thought processes and our minds went on a journey of worry and stress that we hadn’t necessarily prepared for and actually weren’t needed.

But as I sit back and consider the past 11 years the adaptations we have had to make are many, but to the outsider many maybe frustratingly hidden leaving folk wondering what all the fuss is about!

Some of the things that have made a real difference to quality of life have been fairly unsophisticated like rubber bands round utensils and tubigrips on their arms to improve the messages sent back to the brain so eating and writing is more controlled. Getting seating and sleeping spaces right have prevented pain and spasms and enabled rest and ability to stay still! This might have been with bespoke specialist seating that come at an eyewsteringly high price or, with trial and error, the correct cushion or pillow shoved into various corners to prevent bumps or prop up legs!

We no longer have an old icecream tub to hold our household medications…we have a whole double cupboard dedicated to the bottles, tubes of creams, spacers, inhalers, dosset boxes and all other necessary medical paraphinalia that keep them well & sparkly!

We have walls decorated with visual resources painting a picture of how the days are (in theory) going to pan out. Not too detailed so minor changes can’t be coped with, but detailed enough to be the lynchpin for the day. Essential to help with the difficulties with transition and inherant need to control…ahhh! Visual prompts to accommodate one child with short term memory difficulties & the other struggling with executive functioning & concentration.

The lounge which in theory is our calm space is filled with peanut balls, exercise mats, and a human sized bowl for spinning and chilling in that provides just enough sensory feedback to keep our sensory bunny calm! Though doesn’t necessarily calm everyone else as they create an undesirable trip hazard in the thoroughfare!

Adaptations to meal times to accommodate the sensory culinary preferences (cottage cheese, chickpeas and anything burnt!) And a constant supply of crunchy snacks, chewing gum or chewy items to prevent any more bite marks in furniture or chewing of clothes due to the constant oral sensory seeking behaviour.

Normal planning doesn’t do for us! Logistical management takes on a new level considering fatigue, sensory overload, medications, splints, ear defender’s, weighted jackets, visuals and also how to practically manage 2 children in wheelchairs when their maybe only one adult!

Adapted bed time routines, that involve so much more than bath, teeth, pj’s story & bed.

Adapted life plan! Not just avoiding pomotions & working part time hours, but a whole different career, a whole different mindset. How do you get the flexible working that takes into account the days off school due to frequent sickness or school refusal, the micro management of meetings or appointments, tests & all the necessary paperwork, DLA, EHCP, carers assessments? Oh yes & the financial restrictions put on you when you receive carers allowance! You can have it if you care for someone more than 37 hours, but you can’t claim it twice for looking after 2 people & by the way you can only earn  £100 a week! If you have a career that you trained hard for actually getting a contract for so few hours is nigh on impossible! The solution I have fallen into is effectively being my own boss, working hard when I can so it doesn’t all fall apart when I can’t! Trouble is that level of juggle sometimes leads to me falling apart!

Emotional adaptations you have to make along the way can have massive impacts. Relationships are tested as you effectively tag team the caring role, no time to talk or process the latest appointment, diagnosis or meeting about school. The different timings in the processing of it all as one crashed & grieves the other has to up the ante! Friendships are tested and sometimes don’t survive, so a new support network formed. Extended family roles adapted as the expected role of grandparents is morphed into respite carers, and comes with it a whole set of logistical & emotional challenges.

But then there’s the positive adaptations that have taken place. The appreciation of the smaller details, celebration of the moments when unexpected milestones are achieved that otherwise may have been taken for granted! A different level of understanding your child inside & out! The involvement of family to achieve a special trip means they get to be part those intimate moments that they may not otherwise have been part of…Disneyland, trips to London.

The adaptation of our attitude on life! Live for today not for tomorrow, learning to dance in the rain & not waiting for the storm to pass, remembering it’s not what happens that’s important but what you do about it! But really learning that you can’t change the situation you haven’t chosen to be in, but you can change the way you think about it and embrace the necessary adaptations rather than fight against them!”.

You can read this, and other blog posts, here.

Improving the well-being of young children with learning disabilities: A Parent’s Guide

We’re looking for people to take a look at a brand new booklet on improving the well-being of young children with learning disabilities, and to give their feedback.

Researchers at the University of Warwick are working with a group of parents of children with learning disabilities, Mencap, the Challenging Behaviour Foundation, and Cerebra to write a guide for parents to support the well-being of young children with learning disabilities.

The booklet combines what we know from research with parents’ personal experiences. The family activities within the booklet have been shown to be important for supporting the well-being of children with learning disabilities.

There are four chapters in the booklet, and parents are able to use the booklet flexibly depending on what information they want to know at the time. The chapters are about:

  • How to look after yourself
  • Organising family life
  • Spending time together
  • Activities to do with my child with a learning disability at home and outside

You can download a copy of the booklet for free here.

Please tell us what you think about it here.

Thank you for your help.

New Books on Autism in the Library

library books

We have had a lot of requests to borrow books explaining autism recently, so we have purchased some brand new ones.

  • L6732 – A Parents’ ABC of the Autism Spectrum by Stephen Heydt published 2017
  • L6741 & L6742 – Talking with Your Child About Their Autism Diagnosis: a guide for parents by Raelene Dundon published 2018
  • L6743 – Autism Spectrum Disorder (ASD) Autism Explained by Frederick Earlstein published 2017
  • L6745 & L6746 – Understanding Autism: the essential guide for parents by Katrina Williams published 2018
  • L6747 – The Parents’ Practical Guide to Resilience for Children aged 2-10 on the Autism Spectrum by Jeanette Purkis published 2018
  • C0275 – Creating Autism Champions: autism awareness training for Key Stage 1 and 2 by Joy Beaney published 2017 – includes photocopiable material and downloadable resources
  • C0290 – The ASD and Me Picture Book – a visual guide to understanding challenges and strengths for children on the autism spectrum by Joel Shaul published 2017 – includes photocopiable worksheets

If you would like to know more about our postal lending library please email Jan the Librarian on janetp@cerebra.org.uk or visit our library page.

Delivering legal rights through practical problem-solving

In this article we take a look at our Legal Entitlements and Problem-Solving (LEaP) Project – why we started it, what we do, what we’ve achieved so far and the longer term impact of our work.

Why we started the Project

Disabled children and their families sometimes need extra support in order to have a normal everyday life – for example, help with bathing or eating, moving around or communicating. Local councils and the NHS have legal duties to meet these needs by providing support, such as someone to help with personal care at home, specialist equipment, adaptations, short breaks or therapy services. However, we know from our work with families that, in practice, parents often struggle to get the right support for their children and a lack of support can harm the health and well-being of the whole family.

The LEaP Project aims to find out why families struggle to get the help that they’re legally entitled to and what can be done to change things. We want to learn more about the problems families face, so that we can work out ways of overcoming them and helping families to get the support they need. The Project is led by Luke Clements, Professor of Law and Social Justice at the University of Leeds.

What we do

We invite families to tell us about the problems they face in getting the support they need. With expert support from the team at the University, we provide legal information and advice to help families overcome those difficulties. We help families to understand what their legal rights are and what they can do if they fail to get the support they need. We also use the information we get from individual cases to write template letters, factsheets and guides, which can help other families in similar situations.

When we see from our casework that several families are having similar problems, we ask our student volunteers at Leeds to study this problem in more detail (often by doing a survey) and then produce a report with ideas about how policy and practice can be changed to avoid these problems in the future.  Past projects have looked at short breaks, school transport and disabled facilities grants.

Then we use the knowledge gained from our advice casework and student-led projects to improve our understanding of why these legal problems occur and to work out practical ways of overcoming them. We want to find out which problem-solving techniques help families to cope better with the challenges they face and how councils and the NHS can change the way they work.

What we’ve achieved so far

(1)  We’ve attracted funding from the Economic and Social Research Council and from Leeds University, which has enabled us to fund a PhD student, develop our Problem-Solving Toolkit (see below) and fund a research assistant post at the University.

(2)  In 2013 and 2014, we published compilations of our advice letters (the ‘Digests of Opinions’) to help other families in similar situations.

(3)  In 2016, we published a report about ‘short breaks statements’ (these statements are published by councils in England and explain how families can get breaks from their caring responsibilities). The report considered how accessible and accurate these statements were.

(4)  We published a guide for families in 2016 called the “Accessing Public Services Toolkit”. The Toolkit describes some of the common problems families face in dealing with councils and the NHS and suggests ways of solving those problems. A second edition was published in 2017, along with a separate version for families in Scotland. We’ve developed an ongoing programme of workshops across the U.K. to share the Toolkit with parent groups.

(5)  In 2017, the student volunteers at Leeds interviewed a small number of families who had applied for a disabled facilities grant to pay for home adaptations. We published a report called “Disabled Children and the Cost Effectiveness of Home Adaptations and Disabled Facilities Grants”, which considered the benefits of investing in these adaptations, including cost savings and improvements in families’ well-being. The report was launched at a conference at the University of Leeds on 12 July 2017 and resulted in meetings with senior members of Leeds City Council, the NHS Leeds Clinical Commissioning Group Partnership and Foundations (the national body for Home Improvement Agencies), along with an article in the Guardian newspaper.

(6)  On 12 July 2017, the Project Team also launched a research report called “Local Authority Home to School Online Transport Policies: Accessibility and Accuracy”. This report explains how difficult it is for families to find accurate information about school transport on council websites and how some transport policies are more restrictive than they should be. As a result of the report, the team met with representatives from the Department of Education and worked with the charity, Contact, on their inquiry into school transport, including giving evidence to a select committee at Parliament. The Department for Education has decided to review its guidance for councils on school transport and it is planning to produce an accessible template for council websites, so that school transport information is more easily available to families. The team has been asked to share its research data with the Department to help with this work.

(7)  As a result of our casework, the Welsh Government has agreed to make its guidance on continence products more clear, so that families are no longer told that they can only have a maximum of 4 products a day.

(8)  We’ve helped families in England and Wales get the services they need – and persuaded councils to change their policies so that other families aren’t disadvantaged. We’ve built on our casework by publishing parent guides, for example on school transport for England and Wales, so that we can share the lessons we’ve learned with many more families. We’ve also published a series of template letters and factsheets for parents to use.

Longer term impact of our research

We know that our work with families helps them to develop the knowledge, confidence and skills they need to get support:

  • “Thank you for all your help and support. I don’t think I would have got anywhere without it.”
  • “We appreciate the continued support to empower us to go through this process.”
  • “I really do appreciate your support. I hadn’t realised there was so much info available to research.”

We will continue to support families and draw on their experiences to help us plan our research and publish resources which help other families in similar situations.

In 2018, our student volunteers will look at three research topics – how difficult it is to apply for a disabled facilities grant, how well the direct payments system works for disabled people and what social care charges disabled people have to pay for their care costs.

We also want to investigate how policies and practices within councils and the NHS can sometimes make it more difficult for families to get the support that they’re entitled to. We’re developing a detailed research plan, which will involve working with councils and the NHS to explore why these barriers exist and what can be done to remove them. We hope to get grant funding in 2018 for this important study, so that we can help to introduce changes within these organisations which will make it easier for more families to get the support they need.

You can find out more about our LEaP project here.

Template letters for families in England

You can use our template letters to help with the problems listed below.

These are general template letters and they may not suit your specific situation. If you need more help, contact our Legal Entitlements and Problem-Solving (LEaP) Project or read our Parent Guide on Finding and Assessing Sources of Legal Help.

General

Assessments and Care Plans

NHS Continence Services

NHS Patient Transport Services

School Transport

Transition

Do you have ideas for other template letters that could help families solve health care or social care problems? If so, please get in touch with us at probono@cerebra.org.uk

Dr Ross Head to talk at Naidex

Naidex is Europe’s largest disability and independent living event and will take place at the NEC on 25th and 26th April.

We are delighted that Dr Ross Head from our Innovation Centre (CIC) has been asked to speak at such a high profile event. His seminar will take the form of a case study review of three CIC products: a seated tandem surfboard; triathlon equipment which enables a young girl to participate with her father;  a horse riding helmet for a young man with unique head shape. He will also be giving an overview of some the great products his team design and make.

The event is completely free to attend and you can find out more and book your place here.

You can also follow the event on social media #WeAreAble.

Ross graduated in Product Design BSc with first class honours in 2001, and subsequently a PhD in Digital Design Methodology and Glass Product Design at Swansea Metropolitan University. He then became one f the founding members of staff for Cerebra Innovation Centre, whilst lecturing part time within FADE.

Dr Head has expertise in all areas of Product Design, specifically but not limited to design for children with additional needs including R&D, ergonomic studies for children with differing postural and dimensional needs, CAD, field testing, prototyping and manufacture.

He also liaises with industry partners to secure licensing agreements and develop manufactured products.

Furthermore, Dr Head was involved as Company Supervisor for a PhD scholar under the KESS scheme. This revolved around data capture for product concept design for children with additional needs.

Accredited workshops on Accessing Public Services, DLA and Sleep

Guide to claiming disability living allowanceWe are delighted to announce that our workshops on Accessing Public Services, DLA and Sleep have been accredited by the CPD Certification Service.

This means that our information workshops have reached the required Continuing Professional Development standards and benchmarks and that the learning value of each has been examined to ensure integrity and quality.

Our research has shown that families can experience difficulties accessing public services, completing the Disability Living Allowance (DLA) forms and with their children getting a good night’s sleep. Our workshops aim to give families the knowledge, skills and confidence they need to tackle these issues.

Accessing Public Services

While UK law provides powerful rights to accessing health, social care and education support services, the law can be complicated and difficult to understand. Even when you know what your rights are, it can be daunting, exhausting and sometimes intimidating to challenge public officials. This workshop can support you by unpicking potential problems and give you the tools you need to resolve them. The workshop will help you get the best out of our Accessing Public Services Toolkit.

DLA

This workshop will help you to use our DLA Guide to complete the DLA claim form. It also looks at the common problem areas, busts some of the myths around DLA and gets you to assess whether you’re getting the correct rate of DLA for your child (if you already claim it). If you’re not, we’ll talk about how to go about challenging the decision. The workshop also takes a brief look at related benefits.

Sleep

We will help you to understand and support your child’s sleep. The workshop looks at why sleep is so important, what can affect it and strategies to improve problems such as settling, night waking, early rising and sleeping alone. The workshop supports the advice given in our Sleep Guide and by the end of the workshop you should feel more confident to tackle your child’s sleep problem.

If you would like to host one of these workshops please call us on our Freephone number 0800 3281159.

Fetal Medicine Barcelona – University of Barcelona

Why our research is important for families?

We are a research group focused on Fetal Medicine. Our main goal over the last 15 years has been to understand, identify and prevent brain injury during fetal life.

One in ten children will suffer neurodevelopmental delays and learning disabilities. In about two thirds of these, brain injury occurred before birth. Early detection and intervention during pregnancy or the first years after birth offers a unique opportunity for correcting or improving the consequences of brain injury.

Prenatal life is a critical moment that strongly determines future health. The brain is the most clear example of this. Even small changes in the delicate environment of the mother’s womb can substantially deviate the normal development of the brain. In many instances, brain injury is subtle and it goes unnoticed during pregnancy and first years of life. However, these periods offer a critical “window of opportunity” for detecting and preventing neurodevelopmental problems that will appear later in life, when interventions may be much less effective.

Our pioneer research aims at reducing the impact of fetal problems in neurodevelopment. We have contributed substantially to current knowledge on fetal brain injury. We showed that even mild adverse exposures can have very important effects in the fetal brain that will persist until childhood. For instance, thanks to the support of Cerebra we demonstrated how intrauterine growth restriction, a common prenatal problem traditionally considered “benign”, is strongly associated with impaired neurodevelopment in the child. We also developed new diagnostic tools to detect abnormal brain development in the fetus and newborn.

As a natural evolution of our research, we are now testing in clinical trials new interventions to protect the fetal brain. Some studies evaluate how public health measures in large populations can improve brain development, while others are focused on reducing the consequences of brain injury. We are convinced that our research can change the quality of life of thousands of children and their families, from the mildest to the most severe forms of brain injury.

We strongly believe in the future of the so-called “P4 medicine” (predictive, preventive, personalised and participatory). Thus, all our current and future research projects are focused in developing new and innovative strategies for the prediction of brain risk, through personalised tools with a better information and participation of the families, which then lead to effective preventive interventions. Fetal life is a paradigm of P4 medicine, a unique opportunity to protect the quality of life of our future children, and of our society as a whole.

 

Progress from January 2014 to December 2017

  1. We have improved the understanding of how common pregnancy complications (including fetal growth restriction, prematurity and exposure to tobacco or alcohol) are associated with fetal brain development. This has allowed to better understand why some babies are at higher risk of developing brain problems, and identify targets for treatment.
  2. We have developed indicators (biomarkers) of brain injury, which can be detected in imaging techniques from the earliest stages of life. These biomarkers are based on techniques such as ultrasound or magnetic resonance imaging.
  3. We started clinical trials aiming at preventing fetal brain problems: (1) evaluating the best timing for delivery in high risk pregnancies (RATIO37) and (2) improving neurodevelopment by acting on maternal diet and stress conditions (IMPACT). New clinical trials will test treatment that showed impressive results in protecting brain development experimentally.
  4. We have raised awareness on the importance of fetal life:
  • Among healthcare providers through scientific publications, presentations in international congresses, our website, courses, and new medical guidelines.
  • Among the society through our social website http://inatal.org, a mobile app (translated to English soon) to promote a healthier pregnancy and several social actions in collaboration with Cerebra.

Some key indicators of progress are:

  • We have recruited more than 1,200 mothers and fetuses for various research projects.
  • We have published 151 international research papers related with the Cerebra projects.
  • We have delivered 163 invited lectures and 37 chaired speeches, aside from 97 oral communications and 102 posters, at international conferences and seminars.
  • The funding requested initially included the equivalent amount to fund three PhD studentships from 2014-2019, and we have used that funding to partially support and attract a total of 20 PhD students that joined the Erasmus Mundus European Joint Doctorate in Fetal and Perinatal Medicine, coordinated by our group.
  • We have developed partnerships with 11 international and 12 national research groups.
  • Most international clinical guidelines now recognize the importance of “late-onset” growth restriction. The condition was regarded a benign form of IUGR until a few years ago.
  • On the top of Cerebra’s funding of £478,122 from 2014 to 2017, we have raised an extra £870,400 by December 2017 (four years) to support the Cerebra research project.

 

Longer term impact of our research for families

Our research team’s main goal is the prevention of brain conditions from the earliest stages of life to achieve a longer term impact for families. We started working towards this aim with the first research Cerebra programme (2008-2013) where we focused on understanding and development of diagnostic tools. In the second research programme (2014-2019) we have started testing therapies that emerged from the earlier research programme.

Over future years, we will finalise ongoing large studies and start new ones to generate advances that will be applicable to real practice. These tools span from public health approaches to more sophisticated treatments. For instance, the IMPACT trial will generate new tools for empowering parents to apply lifestyle measures with an enormous impact on the quality of life of the future child. In a new trial to start in 2018, we will test prenatal treatments that could substantially reduce brain injury associated with intrauterine growth restriction.

Likewise, among our future research projects, we will expand our advances to other fetal diseases leading to neurological damage, including prematurity, malformations such as spina bifida and cardiac defects, exposure to alcohol/tobacco and environmental exposures.

We believe the impact of our research is important for families. Biomarkers, preventive strategies and personalised treatments will be effective in other serious problems and even genetic diseases. We are now only discovering how brain development may change among individuals with the same “disease name”. For instance, in a new project we are identifying markers of intellectual development prognosis among children with spina bifida, and this will be critical to personalise their therapy. All brain problems, no matter how severe they are, will strongly benefit from a better prediction and prevention, an optimal environment and early and personalised stimulation. All these strategies must definitely start before birth and continue the first months of life.

You can find out more about the research that is taking place at the University of Barcelona here.