COST-CF

• Research type

  Research Study

• Full title

  Core Outcome Set Taskforce for Cystic Fibrosis (COST-CF)

• IRAS ID

  349789

• Contact name

  Kim Thomas

• Contact email

  kim.thomas@nottingham.ac.uk

• Sponsor organisation

  University of Nottingham

• Duration of Study in the UK

  3 years, 0 months, 1 days

• Research summary

  In research, researcher's use measures, called outcomes, in order to find out what treatment works best. For example, in Cystic Fibrosis (CF), a study might look at how a new medication affects the respiratory health of a person. An outcome used to evaluate this could be lung function or number of acute infections affecting the lungs. These are different outcomes, but are both looking at the respiratory health of a person.

  However, currently in CF research there is no agreed way to measure how well someone in doing. Because each study measures the same thing in slightly different ways, it is hard to compare the results between different studies.

  This study aims to determine what outcomes are the most crucial to people with CF, their families, health professionals and researchers in CF research. These are the outcomes that should be measured in every trial in CF, no matter what the trial is about. This set of outcomes is called a core outcome set (COS). In this study, we'll decide what types of outcomes should be measured. In future studies, we’ll decide the best ways to measure them.

  Development of a core outcome set consists of several stages;
  Stage 1. Identifying relevant outcome measures used in trials in CF through the review of current published literature and trial registries
  Stage 2. Involvement of people with CF and the parents of affected children (analysis of results from a previously completed study)
  Stage 3. Mapping to COMET taxonomy and an online meeting with representatives from each stakeholder group to promote COS development and engagement with the eDelphi.
  Stage 4. An eDelphi process engaging all stakeholders to determine which outcome domains from stage 1 and stage 2 are the most important
  Stage 5. Virtual consensus workshops to agree the COS

• REC name

  South Central - Oxford B Research Ethics Committee

• REC reference

  24/SC/0366

• Date of REC Opinion

  4 Nov 2024

• REC opinion

  Favourable Opinion