The 22Crew shall assemble a professionals panel who shall guide all projects and research. The panel will be drawn from the social, educational and medical fields.
The founders would like our initial fundraising to deliver the following:
This research is currently estimated to cost around £10,000. It requires coordination with the UK National Health Service, via the British Paediatric Surveillance Unit. The purpose of the research is to provide a definitive British figure for the incidence of the syndrome that can be used for public service planning for those with 22q.
Current Research Projects
Cardiff University are looking for children with 22q DS aged between 6 and 17 years to participate in a study. The researchers will travel to you to conduct their interviews. Please click here to read more about the study and how you can get involved.
They would also like to learn how parents find out most of their information about 22q Deletion Syndrome. For example, whether parents rely on websites in the absence of information from a geneticist.
Past Research Projects
The University of Newcastle, Australia were investigating parents' and caregivers’ experiences regarding the diagnosis of 22q11 deletion syndrome / Velo Cardio Facial syndrome / Di George syndrome. Specifically, they were interested in the diagnosis experience, how the children were told, and coping methods used. They also looked at caregivers' and parents’ concerns around telling their children about the syndrome.
They hope that the results of the study will provide a better insight into the parental disclosure process and that this in turn will improve healthcare models and processes associated with the care relating to this syndrome.
Participation in this project closed on 1 January 2013, but the results can be viewed by clicking here.
At the foot of the page you will see a PDF icon labelled "Results - PDF". Click on it for the results to be displayed.
PLEASE NOTE - these results are subject to change. It is unpublished data and cannot be used without the written permission of Dr Linda Campbell.
The university are creating a follow up study from this research, so if you’re interested in participating you can email your contact details to Jane Goodwin - email@example.com or Dr Linda Campbell - Linda.E.Campbell@newcastle.edu.au with the subject line "volunteer for parent research".