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The changing face of the UK CF Registry

Rebecca Cosgriff is Registry Lead for the UK Cystic Fibrosis Registry. As she gets ready to address the European Cystic Fibrosis Society about developing a portal for people with CF to access their data, Rebecca takes time out to shed some light on how the Registry works, and where it’s headed.

What is the UK CF Registry?

The UK CF Registry is a secure online database that collects clinical data about consenting people with cystic fibrosis, which is submitted by their healthcare teams. Over 99% of people with cystic fibrosis, or their families, consent to their data being held in the Registry, which is designed to give a better understanding of cystic fibrosis, and improve clinical care and health outcomes. We recently upgraded the software that we use to support the Registry to make it easier for clinical teams to enter data, and lay the foundations for more exciting developments in ‘phase II’.

How does the Registry impact the lives of people with cystic fibrosis, in its current form?

The data, which is ‘pseudonymised’ so that noone can identify individuals, is used in a number of ways to maximise the impact of the Registry on the lives of people with cystic fibrosis. Researchers apply to access data to carry out research projects that will help us better understand cystic fibrosis and improve care. This process is overseen by the experts in the Registry Research Committee, who ensure that data is used in line with the consent that is given by people with cystic fibrosis. We publish an Annual report each year (in both detailed and at-a-glance formats) to give people with cystic fibrosis, their families, healthcare teams, and policy makers a snapshot of cystic fibrosis care and health outcomes across the UK.

We also submit anonymised data to the European Cystic Fibrosis Society Patient Registry, which means we can see how cystic fibrosis populations differ across Europe. We have just published an at-a-glance report showing what the European data means for the UK. The Registry team also produces reports for the European Medicines Agency (EMA) to help them monitor the safety of new therapies, and give NHS commissioners information they need to fund cystic fibrosis centres based on the complexity of their patients’ needs. The Registry software also gives feedback to the clinical teams who provide the data, so that they can monitor and benchmark the care and outcomes of their patients in real time, so they get the most out of their data too.

So what’s phase II about?

Phase II is about building on the success of the Registry to keep it at the cutting edge of developments in healthcare data. This includes developing Registry-based clinical trials like CF START, and creating a portal into the Registry for people with cystic fibrosis, called ‘My CF Registry’.

Ok, so what is ‘My CF Registry’?

My CF Registry is a window into the Registry designed specifically for people with cystic fibrosis. We are basing the way it works on what the CF community told us we should do, when they filled out the Registry Survey back in 2015. It will give people with cystic fibrosis the option to contribute directly to the Registry by filling in surveys that relate to their quality of life and well-being. Because these surveys will be entered directly into the Registry, the data will be linked to the clinical information we receive from the NHS, creating an even more powerful resource for researchers and driving  positive change for people with cystic fibrosis. My CF Registry will demonstrate the real-world need for new therapies as they are developed, and their impact. People with cystic fibrosis will also be able to view a unique dashboard of their own clinical results, to better understand what information the Registry holds and get a real insight into their health over time.

Why is it important for people with cystic fibrosis?

We hope that My CF Registry will help people with cystic fibrosis who want to get meaningfully involved in the Registry, as well as getting something back themselves. People with cystic fibrosis have a vital role to play in developing My CF Registry, they’re involved at every stage to make sure it’s as useful as it can be. We will continue to add to the functionality over time to meet the evolving needs of a dynamic and informed population.

Sounds exciting! What’s happening next, and when?

We are currently testing a prototype of My CF Registry, with a view to piloting the system in a small number of sites this autumn. We will use the results of the pilot to refine the system further, and aim to open up My CF Registry to everyone with cystic fibrosis receiving care in adult centres across the UK in early 2017.