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 info@headlines.org.uk


Top Ten Research Questions – Update from the Cleft & Craniofacial Anomalies Clinical Studies Group

Ingrid Laurence and Helen Keighley, parent representatives on the Cleft & Craniofacial Anomalies Clinical Studies Group, funded by NHS England, were tasked to draw up a list of top ten patient priority research questions in Craniosynostosis and other associated craniofacial conditions (both non-syndromic and syndromic).

We are delighted to report that, following a long consultation with members and health professionals, a list of over 30 questions were proposed. These were then reduced to 17 questions which were discussed at our Inaugural Headlines Conference in February 2017. These have since been ranked by our members to produce the Top Ten Priority Research Questions.

» Click here to view the final Top Ten Research Questions


Sing and Say

Researchers at the John Radcliffe Hospital, Oxford are undertaking a project called "Sing and Say". This project is aimed at children between the ages of 18 months to 2 years. The team hope to develop a web-based learning tool for children with craniosynostosis.

Update: A video resource is in production which we hope will be launched later this year. For more information about this study contact Sarah Kilcoyne, Speech and Language Therapist at sarah.kilcoyne@ouh.nhs.uk.

Note: This research is not funded or organised by Headlines Craniofacial Support, and therefore we cannot take responsibility for your involvement in the research.

Family Weekend

The Headlines Family Weekend is our main event, which we host annually and generally runs from Saturday morning to Sunday lunch time.

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