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Our research projects

Finding the best ways to support parents of children who have been diagnosed with craniosynostosis

Dr Jo Horton and her team at Birmingham Children’s Hospital are exploring the ways in which parents of children with craniosynostosis are affected by the diagnosis.  


A diagnosis of craniosynostosis can be especially distressing for the parents, who may find it difficult to cope with the knowledge that their child has the condition and who may, understandably, become incredibly stressed during the long surgeries and treatments.

Dr Horton’s study is exploring how parents feel in the 20 months after their child’s diagnosis, using data from interviews with the parents about how they feel supported (or not) and whether they face any challenges, and by using forms filled out by parents about their feelings of distress, whether they feel burdened by the diagnosis.

By using this data, the team hope to find out what causes parent’s stress and how hospital healthcare teams can best provide support to them.

The funding that Headlines is contributing towards the study will provide the team with the ability to continue their research into this poorly-understood area of the diagnosis process, and allow them to identify the best ways to support parents undergoing stress, feeling burdened or being unable to cope with their child’s life-changing diagnosis.

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Growing bones to replicate craniosynostosis and improve our understanding of the condition

Professor Karen Liu and her team are developing a way of modelling craniosynostosis by using actual biological cells. The team, based at King’s College London, is making use of stem cells – special types of body cells that are able to develop into a variety of other cell types (form blood cells to skin or bone cells, for example).  By stimulating, or programming, these cells to become bone cells, the researchers can grow the bones of the skull. By changing the DNA sequence in these stem cells, however, they can cause the grown skull bones to fuse with each other, modelling various types of craniosynostosis.

In craniosynostosis, the sutures (gaps) between skull bones fuse too early in the skull’s development, usually before birth (generally, these bones fuse in adulthood to allow for brain growth), causing altered head shapes and, in some cases, affecting a baby’s breathing, hearing and vision.

The shape of the skull varies depending on which suture closes up, with each variation of craniosynostosis being caused by different changes in the DNA sequence that controls skull fusion. One change may lead to sagittal synostosis, for example, whilst a different change may lead to coronal synostosis.   

The KCL team are aiming to develop a way to model different types of craniosynostosis using bones grown from stem cells. By changing the DNA sequence of the stem cells they will then be able to model different types of craniosynostosis, and find out which changes cause which conditions.  Using these models, researchers could programme a baby’s stem cells early in development to force them to not fuse, avoiding craniosynostosis entirely. The use of stem cells also may allow for personalised treatments, as each person’s stem cells are unique to them, due to their DNA.

The funding that Headlines is providing for this key study is absolutely vital to allow the researchers to continue their work in developing the ability to programme stem cells to prevent premature skull fusion and provide treatments and therapies for developing babies at risk of craniosynostosis.

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