All patients are asked for consent to anonymised data being entered in to the registry. Clinical data is collected in the Annual Review and entered on the Registry. The data from all participating centres is analysed and an annual data report published. This report provides important information which should contribute to creating standards of care, designing clinical trials to test new therapies, and improving the delivery of care.
Visit our clinical outcomes section for links to national or international centres that benchmark services also provided by Great Ormond Street Hospital (GOSH).
Quality Improvement ProgrammeThe CF unit at GOSH strives to provide the best care possible for children with CF. The unit has an comprehensive continuous quality improvement programme which includes:
- regular family satisfaction surveys
- regular audit projects on various aspects of clinical care
- participation in external peer review process (CF Trust/British Thoracic Society)
- collaboration with non-medical corporate bodies to improve overall provision of care
Current QI initiatives include:
- Programme of closer collaboration with network clinics to standardise care across the GOSH CF network.
- Development of a CF information system with data entry at source by the specialist centre and all networks to improve communication and record keeping.
- Evaluation of an intensive outpatient physiotherapy and nutritional intervention on clinical status and frequency of hospital admissions (Frequent Flyer Programme).
- Review of the pathway of care during the first year of life for infants diagnosed by newborn screening.
- Inpatient admissions – best place of care for routine IV admissions.