Living with Cystic Fibrosis (v2)

  • Research type

    Research Study

  • Full title

    Quality of life measurement in people with cystic fibrosis registered with the UK CF Registry



  • Contact name

    Siobhan Carr

  • Contact email

  • Sponsor organisation

    Imperial College London

  • Duration of Study in the UK

    3 years, 0 months, 1 days

  • Research summary

    So far to our knowledge, no large scale, prospective study has been conducted worldwide to assess the quality of life in cystic fibrosis population that contains a sufficient sample size and a range of population characteristics to inform longitudinal observation, risk prediction models and economic evaluation parameters.
    In order to be able to assess all the aforementioned parameters, we will be inviting people with cystic fibrosis to participate to a suite of online questionnaires of Quality of Life measurement. We propose the application of an online based questionnaire that will entail 3 different already validated instruments to capture all the relevant parameters of CF patients quality of life and utilization aspects. The Cystic Fibrosis Quality of Life (CFQoL) questionnaire to measure the CF specific quality of life of adult and adolescent patients, the EQ-5D tool which is a generic tool with limited clinical utility but it is a recognised measure for use in cost benefit analyses and finally the personal well-being questionnaire of the Annual Population Survey (APS) conducted by ONS. These questionnaires will be completed by patients that are registered with the CF Registry and linked to their demographic and annual encounter clinical data. The CF Registry is sponsored and managed by the UK Charity, the Cystic Fibrosis Trust and is a research database holding data of people with CF in the UK. About 99% of all people with CF in the UK have provided explicit consent to the Registry. Patients will be invited to participate through Patient Information Sheets that will be sent along with their annual review letters once a year. On the day of their annual review they will be given a unique code along with a website address to securely log in and complete the questionnaires.

  • REC name

    North West - Liverpool Central Research Ethics Committee

  • REC reference


  • Date of REC Opinion

    18 Jul 2016

  • REC opinion

    Further Information Favourable Opinion

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