Research | Our research priorities

In 2016 the National Institute of Health Research (NIHR) Cleft and Craniofacial Clinical Studies Group suggested that Headlines produce a list of patient-focussed priority research questions.

We then consulted with members and asked them to submit their top 2 research questions. A longlist of 30 questions was collated from submissions made by over 100 members, and then ranked through a workshop with members and health professionals at the inaugural Headlines Conference.

A list of 17 questions was presented back to the members through an online survey, ranked again and final list of 10 questions identified. These were questions validated as “unanswered” by a range of expert health professionals and researchers in the field of craniofacial research.

The ‘Top Ten’, which have helped guide our work with the research community, were:

1. What are the long-term effects on development for a) syndromic and b) non-syndromic craniofacial patients – physical and psychological?

2. What is the most reliable way to determine whether a child has a level of ICP that could cause impaired brain function?

3. Which types of craniofacial surgery work best, and what is the optimum age to perform them?

4. What are the causes of single suture and non-syndromic synostosis?

5. Can better scans/monitoring help identify craniosynostosis during pregnancy?

6. What do paediatricians, GPs and health visitors know about craniofacial conditions, and what is the most effective way to improve their knowledge?

7. How is an adult patient affected physiologically by their craniofacial condition –intracranial pressure/risk of stroke/other issues – and how are they monitored?

8. Are there links between craniosynostosis and other medical conditions(autism/dyslexia/gynaecological/gastro/endocrine/bones)?

9. What is the risk of further surgery for each of the craniofacial conditions?

10. Are adult craniofacial patients likely to suffer from mental health difficulties, or are they more resilient, due to their upbringing with the condition?

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