Cystic Fibrosis clinical outcomes

The Cystic Fibrosis (CF) unit at Great Ormond Street Hospital (GOSH) submits data to the UK Cystic Fibrosis Registry. This registry tracks the health of people with Cystic Fibrosis throughout the UK and the aim is to continually improve the standard of clinical care. All patients are asked for consent to anonymised data being entered on the registry. Data from usual clinical care are collected at clinic appointments and the CF Annual Review and entered onto the CF Registry. The data from all participating CF centres is analysed and an annual data report published by the Cystic Fibrosis Trust. This can be found on the Cystic Fibrosis Trust’s website. The report provides important information which contributes to creating standards of care, research including designing clinical trials, 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).

The CF unit at GOSH strives to provide the best care possible for children and young people with CF. The unit has a 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/NHS England)
• collaboration with non-medical corporate bodies to improve overall provision of care

There are multiple opportunities to get involved and participate in CF research at GOSH.

This includes many different types of research. Examples include studies which involve surveys and interviews, additional or alternative investigations (e.g. a blood test) to understand more about CF, through to clinical trials of new medicines.

Some of these research opportunities are in line with usual clinical care appointments, and some involve separate study visits e.g. to the GOSH Clinical Research Facility.

The GOSH CF service is actively involved in the CF Trust’s CTAP (Clinical Trials Accelerator Platform) and plays a major role in the London regional CTAP network. Through this network, we can ensure that research opportunities are available to children and young people at GOSH.

It also enables children from other centres to be referred to participate in certain studies at our site, for example clinical trials of new medicines.

Members of the team involved in research are supported by a CTAP research coordinator.