People with CF, parents, carers, friends and family, all desire to know about the "Science of CF” at some point in time, particularly regarding how CF is treated.
For many, “science” conjures up images of white lab coats, bubbling coloured solutions in test-tubes, mathematical equations, space shuttles, microscopes and Professors like Einstein. However, science is hugely relevant to CF, in terms of diagnosis, treatment and current research and collectively helps improve the quality of life for people with CF.
In order to help address how best to communicate the “Science of CF”, this survey has been developed to find out what you would like to know and what you feel you need to know about the “Science of CF”. Additionally, it is important to ensure that such information is reliable, is delivered to you from a trustworthy source and in an acceptable communication manner.
This survey consists of 40 questions and will take approximately 20 minutes to complete. Collective responses to this survey will help guide better ways of communicating science to the CF community. Once all survey responses have been received and analysed, you may freely find out the outcomes of this survey at the following website www.cfscicomms.weebly.com
It is anticipated that survey results will be available in late 2018/early 2019.
Please note that participation in this survey is voluntary and totally anonymous.
We thank you in anticipation for completing this survey.
This survey is being carried out by the Northern Ireland Microbiology Discussion Group (NIMDG), which is a non-commercial and not-for-profit learned society. NIMDG has a strong base within cystic fibrosis and over the past two decades, several healthcare professional members of the Group have developed important links with the CF community through research and healthcare delivery.
We thank Cystic Fibrosis Australia, Cystic Fibrosis Canada/Fibrose kystique Canada, Cystic Fibrosis Foundation, Cystic Fibrosis Ireland and The Cystic Fibrosis Trust, for providing input to the survey.