To parents and young people with IBD,
CICRA Survey 2013: The attitude of young patients and their families towards research, and thoughts on living with Inflammatory Bowel Disease (Crohn’s and Ulcerative Colitis)
In CICRA’s 35th year we are launching a fact finding survey to gather information from young patients diagnosed with Crohn’s and Ulcerative Colitis, and their families, to help us in our future work. For those of you who are not aware of CICRA we are dedicated to creating a wider understanding of Crohn's disease and Ulcerative Colitis, particularly as it affects children and young adults and to raise funds to support approved medical research aimed at finding more effective treatments and an eventual cure.
Parents and young people who are already CICRA members or supporters will have already received a paper copy of the survey with their Spring 2013 Insider newsletter, with added instructions about the optional use of SurveyMonkey. However we are keen to reach out to other UK patients with IBD (inflammatory bowel disease) under 20 years of age and invite you to complete the survey doc via Survey Monkey
The questionnaire has been developed by CICRA with the assistance of one of CICRA’s recent Research Fellows, Dr Tony Wiskin who is now a Clinical Lecturer at University of Southampton, our Hon Clinical Director, Dr Nick Croft from Barts & The Royal London Hospital and CICRA Trustee Dr Deborah O’Neil.
This survey is primarily about paediatric Crohn’s and colitis research and your answers, about what types of research you feel are important, will help us in some of our future decisions. Additional questions about patients, family life, current medicines and treatments are included, as that knowledge will also help us going forward.
If you are a parent of a child with IBD we shall be grateful if you will encourage your child to complete the form, with your help if necessary. You will see from the forms that while we have asked for the first part of your post code (so that we are aware from which areas of the UK the replies come from), in all other aspects replies will be anonymous.
We are also sending a separate supply to the major regional IBD Children’s Hospitals and clinics. Should you have access to more than one copy, please only complete one questionnaire. If you know of other families with a child with IBD who are not already in touch with CICRA but may wish to help us by completing a questionnaire, please ask them to e-mail: firstname.lastname@example.org or telephone 020 8949 6209. You are also welcome to contact us at any time and we will be happy to answer your specific questions.
The survey will be open until 30th NOVEMBER 2013 and we very much hope that you will take part; we are planning to share the results in a future issue of CICRA’s Insider newsletter and through other mediums, including our website at www.cicra.org .
The CICRA team
Crohn’s in Childhood Research Association, Parkgate House, 356 West Barnes Lane, Motspur Park,
Surrey, KT3 6NB. Tel: 020 8949 6209 Fax 020 89422044 email: email@example.com www.cicra.org
Reg. Charity nos. England & Wales 278212, Scotland SC040700