The CCAA is a registered charity (No. 1004200) run by parents and professionals
CCAA News
September 2010
Youthhealthtalk.org.uk
Young people talking openly about health, illness & lifestyles
University of Oxford, Health Experiences Research Group, Department of Primary Care, Old Road Campus, Roosevelt Drive, Headington, Oxford, OX3 7LF Tel: 01865 289328
WE ARE LOOKING FOR YOUNG PEOPLE AND PARENTS TO TAKE PART IN A PROJECT ON CLINICAL TRIALS: CAN YOU HELP?
Purpose
The purpose of the study is to improve understanding of the experiences and information needs of children, young people and their parents who are invited to take part in clinical trials. The trial may be of any form or type of treatment and care including for example:
o medicines
o surgery
o physiotherapy
o dietary changes
o vaccines
o neonatal care
o and other forms of treatment and care
Who can take part?
o Young people (ages 12 years upwards).
o Parents of children (all ages) who have been invited to take part in a clinical trial.
o If you have been invited, taking part, completed, declined, or withdrew part way through a clinical trial.
Recruitment period is from January 2010 through to Summer 2011.
What would it involve?
I would ask you about your experiences and views in an interview (face-to-face, by telephone or via the internet). You can also share your experiences through a photo diary, poems, drawings, or photos.
- How did it feel, what did you have to do, could it have been better?
- What information were you given, did you understand it?
- Why you decided to take part (or said no)?
How will we use the findings?
The findings will be presented as new section of the www.youthhealthtalk.org web resource. The site will feature summarises of key topics illustrated by video, audio and/or written clips from the interviews. The web resource will allow others to listen to talking about experiences of clinical trials; to learn from these accounts and the information on the site; and thus to make a more informed choice. The site will also help answer any questions people have during the trial.
Please contact Dr Lesley Powell:
Email: lesley.powell@dphpc.ox.ac.uk or telephone on: 01865 617768.
I would be happy to answer any questions regarding this project and your involvement. Many thanks.
June 2010
19th Annual General Meeting
The Children’s Chronic Arthritis Association (CCAA) 19th AGM is to be held at Avon Tyrrell, Bransgore, in Hampshire on Saturday 17th July 2010 at 7.30 pm.
May 2010
Local solicitors presents £1150 to the CCAA
March & Edwards, a firm of solicitors in Sansome Walk,
Caroline Cox, General Secretary of the Children’s Chronic Arthritis Association based on the City Walls Road, Worcester, received the cheque from March & Edwards’ Head of Employment Law, Guy Salter and comments: “We are so grateful to have received this very generous donation from the partners and staff at March & Edwards. We have been involved with the firm for many years, in many different ways. This new donation will be specifically used to assist children with juvenile arthritis at a weekend event to be held later this year to give the children and their parents a chance to gain support, information, relax and have some fun.”
Mr Salter said: “March & Edwards has been delighted to assist in such a worthy cause as this with the local community.”
February 2010
The new CCAA website!
After three months of development and hours of work given freely by volunteers, the new Childrens Chronic Arthritis Association website is live!
Please foward the address of the site to anybody you think will be interested in the site.
We hope you find the new format and content to your liking and hope to hear from you with any comments or suggestions.:
The CCAA is a registered charity (No. 1004200) run by parents and professionals
Headquarters
General Secretary: Caroline L Cox, Ground Floor, Amber Gate City Wall Road, Worcester WR1 2AH
Tel: +44 (0)1905 745 595 | Fax: +44 (0)1905 745 703 | Email: info@ccaa.org.uk
Patron: Prof. P Woo PHD. FRCP. FRCPCH
Patron: Prof. T Southwood BM. BS. FRCAP. FRDP. FRECPCH.
Patron: Dr N Hasson MB, ChB, FRCPCH.