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


What it is like living as a young person with syndromic craniosynotosis

A trainee Clinical Psychologist from the University of East London is looking for young people and parents to take part in a research study. The study aims to gain a better understanding of what it is like living as a young person with syndromic craniosynotosis.

To take part you need to:

- Be aged 12 to 19.
- Have a diagnosis of a syndromic craniosynotosis.
- Have not had surgery to change the appearance of your face

OR

- Be a parent of a young person who meets the above criteria.

Young people who take part will receive a £10 Love2Shop voucher. The study will involve separate interviews for young people and parents, in a location that is convenient for you. If you are interested in taking part and would like more information about the study please contact the researcher: Amy Edwards, Trainee Clinical Psychologist, U0827468@uel.ac.uk
Note: This research study is not funded or organised by Headlines, and therefore we cannot take responsibility for your involvement in the research. It is an individual's choice to take part.


ART in the Family

A researcher at the University of Ulster is looking for families with Crouzon or Apert syndromes to take part in a photographic study.

This new study aims to use photographic medium to visually represent how Advanced Reproductive Technologies (ART) present ordinary families living with genetic disease with some of the most challenging decisions. If you are interested and would like more information about the study, please click here to read more and contact Susie Rea, PhD Researcher on rea-s6@ulster.ac.uk.

Note: This research study is not funded or organised by Headlines, and therefore we cannot take responsibility for your involvement in the research. It is a patient’s choice to take part


Sing and Say

The Oxford Craniofacial Unit Speech and Language Therapy Team, at the John Radcliffe Hospital are undertaking a project called ‘Sing and Say.’ They have designed a suite of resources for children with craniosynostosis aged 18 months to 2 years of age to support parents to encourage children’s speech and language development in the home environment. These resources are all hosted online on a website.

Sing and Say features an i-book, instructional videos, songs, leaflets and animations to promote communication development. The website can be accessed here: https://www.ouh.nhs.uk/singandsay/

Researchers are measuring the impact of using Sing and Say on children’s language development, as well as investigating how parents find using the resources. The team also made an original music video featuring children with craniofacial conditions called ‘Shooting Star’. You can watch the video here: https://www.ouh.nhs.uk/singandsay/shooting-star/default.aspx

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.


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

Ingrid Laurence and Helen Keighley, parent representatives, and Wendy Edwards, Headlines representative, 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

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