CFI Invites Your Participation in the Science of CF Survey

CFI Invites Your Participation in the Science of CF Survey

Cystic Fibrosis (CF), is a complex and multi-organ condition which primarily affects the respiratory and digestive systems. Other medical issues include, CF-related diabetes, malnutrition, liver diseases and subfertility issues, particularly in males, as well as chronic lung infection.

Because of this, health literacy is extremely important for people with CF, their family and friends. People with CF want to learn more about their condition and are actively seeking information on new treatments in development which may ultimately and significantly improve their health outcomes.

The challenge for healthcare professionals and scientists is finding out what people with CF want to know about their condition and how best to communicate that information in a manner that is both accessible and reliable.

In an effort to address that challenge, the Northern Ireland Microbiology Discussion Group (NIMDG) (not-for-profit) has launched a survey. The survey consists of 40 questions covering everything from your cross-infection concerns to what you consider to be your most reliable sources of CF information.

CFI invites your participation in this survey which has already taken off with over 200 completed surveys worldwide from Ireland, Northern Ireland, South Africa, Brazil, Israel, Canada and the USA. The survey is voluntary and completely anonymous and takes only 15-20 minutes to complete. It will run to the end of 2018 and the outcomes of survey will be available at the following website.

NIMDG has a strong base within CF 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.

The survey has been developed in conjunction with Cystic Fibrosis Australia, Cystic Fibrosis Canada/Fibrose Kystique Canada, Cystic Fibrosis Foundation (USA), Cystic Fibrosis Ireland and the Cystic Fibrosis Trust (UK).