Experiences of Living with Cystic Fibrosis; The impact on children, young people, adults and their families


Therapeutic category
Trial status
Completed Participating Centres

Full title

A study to understand needs, challenges and aspirations of people with cystic fibrosis and their siblings in the UK

Through interviewing both the patient with CF and their families, this study hopes to establish a clearer picture of the effect the condition can have on the individual themselves and on their immediate family, in various aspects of their lives. From this, we hope to understand the key challenges facing these populations to help tailor the development of services.
Trial Reference Number
Trial type
Length of participation
1 day
Recruitment target
Last edited date
CF sponsor
UCL Great Ormond Street Institute of Child Health
CF sponsor type

Who can take part?

Top inclusion criteria
  • 11yrs + with CF
  • 11-25yrs Sibling of someone with CF
  • Parent/Carer of someone with CF
Top exclusion criteria
  • Insufficient English to complete Quality of Life interview

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