Research | Get Involved

Getting involved in a research study can take many forms depending on the type of research. Research studies can be clinical trials where one treatment is tested against another treatment (or a placebo treatment); research studies might involve completing a questionnaire about your general health or psychological health; research studies might also involve the collection of information and samples to help researchers understand your condition. Some people find that taking part in a research study is a very interesting and rewarding experience.

If you are invited to join a clinical trial, you will be asked to go through a process called informed consent. It is always important to talk over any potential advantages and disadvantages of getting involved in research with your GP, consultant, nurse or therapist. It is your choice whether to take part in research and you can change your mind at anytime during a trial. If you decide to take part, you'll be asked to sign a consent form to say you're agreeing to participate in the trial and have understood what it involves. At this stage you will already have read the patient information document about the trial and had your questions answered by the researcher.

If you’re under 18, a parent or guardian must give permission for you to take part in a trial and sign the consent form.

The research studies listed on this page have received full ethics approval and are being undertaken at a reputable research institution or hospital. If you are a researcher and would like your study considered for inclusion please contact

Psychological wellbeing and support needs of people born with craniosynostosis and their families

Led by Dr Nicola Stock at the Centre for Appearance Research (CAR) at the University of the West of England in collaboration with Headlines, this study examined the long term physical and psychological effects for individuals with both syndromic and non-syndromic craniosynostosis and makes recommendations for future service delivery and development.

You can read and download a summary and a full version of the findings here:

» Download summary report
» Download full version

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