Tag Archives: Cardiff University

Cerebra and Cardiff University collaborate to advance support available to families

Hello, I’m Lowri and I’m really happy to be joining Cerebra to work on an exciting and new Welsh Government funded project, as part of a Knowledge Transfer Partnership between us and Cardiff University. Before joining the team, I worked for the National Centre for Mental Health (NCMH). The NCMH is a team based at Cardiff University, and they research the causes of mental health conditions in adults and children. Speaking with parents of children taking part in the study, it was clear that families often feel the level of support is lacking after they receive a diagnosis. This project aims to address this important issue.

We will be working with the Cardiff University Division of Psychological Medicine and Clinical Neurosciences in order to improve the helpfulness of information and the services which families and children living with rare genetic disorders struggle to access. We will be focusing on improving mental health related information available to families.

Rare genetic disorders are caused by changes in a person’s DNA (their chromosomes). These changes vary in size. That means they can either affect a very small part of someone’s DNA, or the changes can be bigger and affect a larger area. Some rare changes to our DNA can lead to serious impacts on our physical health, brain development and affect our mental health too.

These disorders are rare because individually, they are not seen very frequently in the general population. However, if we looked at the whole population altogether, 1 in 17 people in the UK will be affected by at least one of these conditions, that’s 3.5 million people! One of the most common disorders is called 22q11 Deletion Syndrome (also known as DiGeorge Syndrome), with 1 in 2000 new born children being diagnosed. Another, much rarer syndrome is called Kleefstra syndrome, and occurs in less than 300 in the UK.  Cardiff University are currently researching these conditions in order to answer the question often asked by parents: “What does this diagnosis mean for my child, and where can I get help and advice?

Research has shown that people diagnosed with these rare genetic disorders often experience difficulties with their mental health, yet families have trouble finding helpful information and struggle to access mental health and other services for their child. We believe it’s important that everyone can access useful, high quality information about mental health conditions, based on the very best evidence from research.

We aim to work with medical services, other charities, as well as families with lived experiences to get a well-rounded idea of what services currently offer that is really helpful, what is unhelpful, and what people think could be improved. We will also ask what they think about the availability and quality of information about developmental and mental health conditions in children and young people. We hope that doing this will lead to important changes in services in order to equip people with key information and empower families and children to make informed choices that are best for them.

Myself and the rest of the team involved feel very passionate and committed to this project, and hope that it will make positive changes for families in the future.

Improving the mental health of children with brain conditions

We are launching a new project to help families of children with brain conditions access timely and appropriate mental health services. It’s aimed at families of children with rare developmental brain disorders, with a genetic cause, that carry a high risk of them developing conditions such as ADHD, autism, or schizophrenia.

We are working with The Institute of Psychological Medicine and Clinical Neurosciences (IPMCN) at Cardiff University on the project. The project will use the expertise developed at Cardiff to inform parents of the risk factors, challenges and behaviours their child may experience and give them the knowledge they need to seek early support. The project also aims to encourage genetic and mental health services to work together for the benefit of children and families.

As genetic testing becomes even more effective, cheaper and informative the numbers of children receiving a genetic diagnoses will increase. Over the last 10 years Cardiff University has built one of the largest and most detailed studies of individuals with these rare brain conditions. They have gained major insights into their development and the early indications that individual children might be autistic, have ADHD, or develop schizophrenia. The earlier we can intervene to support the child and their family the better the long term outcomes are likely to be.

We want to ensure that we have the evidence based information to pass onto parents in a way they can understand and use to make informed choices about what is best for their child and their family and to access timely and appropriate mental health services. At the same time we will work with clinicians so that they understand that these children face greater risks and challenges and should be able to access services at the earliest opportunity.

The understanding of genetic causes for brain disorders has many potential benefits for families, doctors and society. Genomic medicine promises greater opportunities to:

  • develop new treatments based on an individual’s biology and more precise diagnosis.
  • provide better information on anticipating and preventing serious mental and physical health impacts.
  • help parents, doctors, educationalists and wider society to better understand the underlying causes and consequences of developmental brain disorders, confronting some of the stigma and discrimination children and their families continually face.

As part of this project we will:

  • Identify other voluntary organisations with overlapping interests and involve them in the stakeholder advisory panel.
  • Develop strong partnerships with small condition specific support groups developing cooperative approaches to sharing and developing information resources.
  • Use our current skills, capabilities and family contacts to develop high quality accessible multimedia resources for families.
  • Work collaboratively with service providers to develop and test a model way of working to achieve improved health and education outcomes for children. An approach that can be shared and developed across authorities.
  • Contribute to teaching and training at the University Medical School, ensuring future generations of clinicians are better equipped to deliver services to help children with intellectual and developmental disorders in harmony with the wishes of their families.

We are currently recruiting a coordinator for this work who will hopefully start in January 2019. In the first instance our work will be focused in Wales, but will be rolled out across the UK as the project develops.

Two thirds of the cost of this ground-breaking and very exciting new project is being met by the Welsh Government and Innovate UK with the balance needing to be raised through the generosity of our amazing supporters. Our contribution to this project, which will have far-reaching effects, is just under £2,000 per month for the next three years.

If you would like to be a part of something amazing and help make a real and lasting difference to the lives of children with brain conditions and their families then please make a donation towards the costs – your contribution, no matter how small, will help others. You can donate online or call us on 01267 244206.

We’d also love to hear from you if you are the parent or carer of a child with a  brain condition who is experiencing problems with their mental health. Please contact us on [email protected]

Working to improve children’s mental health

We are working on a joint funding bid with the Institute of Psychological Medicine and Clinical Neurosciences, Cardiff University for a ground-breaking project on children’s mental health.

The Institute of Psychological Medicine and Clinical Neurosciences (IPMCN) conduct high quality research into neurodevelopmental disorders and mental health problems in children and young people. Their research aims to learn more about the early origins, development and impacts of neurodevelopmental and mental health problems on children, young people and their families. Their overall aim is to improve prevention, interventions and policy.

This Project focuses on developmental genetic conditions called ‘Copy Number Variants’ (CNVs). Some people are born with genetic changes called ‘Copy Number Variants’ (CNVs). In some cases a section of their genetic code might be repeated (a duplication), and in other cases a section might be missing (a deletion). Some CNVs appear to have little or no effect, but some can be very serious. Occasionally a CNV might even give someone better resistance to certain illnesses.Generally however, CNVs are a significant cause of learning and developmental disorders, some of which are linked to a higher chance of experiencing serious psychiatric disorders.

Our project aims to develop more effective ways of ensuring children with intellectual and developmental disorders (IDD’s) have greater access to modern personalized genomic and integrated psychiatry services according to parents’ needs and preferences. 

Research at Cardiff University means we know which CNV’s carry risk of debilitating psychiatric illness; understand environmental influences and are able to recognize indicative emerging behaviors and emotional difficulties. This knowledge, when shared, will facilitate earlier intervention that is more appropriate. Intervention that will improve longer-term outcomes for children and their families.

We will use this knowledge to empower anxious families to access the best care for their children and engage with and influence multi-disciplinary services for children with intellectual and developmental disabilities. This project will support the creation and implementation of new, highly innovative and locally tailored, Shared Decision and Referral Support Services (SDRSS) that link inter-agency communications and decision-making. These services will engage with and influence service providers as well as advising, and directly advocating for families in need of services.

As part of this project, we would want to develop strong partnerships with small condition specific support groups developing cooperative approach to sharing and developing information resources. Use Cerebra’s skills, capabilities and family contacts to develop high quality accessible multimedia resources for families. Work collaboratively with service providers to develop and test a model way of working to achieve improved health and education outcomes for children.

We will know shortly if our bid has been successful, so watch out for the press releases.