In 2013, we carried out a strategic review of the Cystic Fibrosis Trust’s Registry. We suggested ways in which the Registry could be developed to fulfil its potential benchmarking (as a national clinical audit) and research roles. This included:
- in-depth consultation with stakeholders;
- research into and assessment of the key issues;
- gathering and presentation of findings; and
- recommendations for future development – a ‘blueprint’ for the next five years.