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Cystic Fibrosis Trust

Personalised CF healthcare

Find out more about personalised medicine and care, and how the changing face of healthcare is bringing you promising new opportunities.

Over the years, healthcare in the UK has changed substantially. New technology, medicines and understanding have raised the bar, leading to better outcomes for everyone, not just people with cystic fibrosis. The next step-change is personalised healthcare, and it’s happening now! Find out more about what it means for you today, and in the future…

The story so far

Healthcare has traditionally been fairly ‘one size fits all’ – people are treated largely the same way according to the condition they have, with some adjustments for individual differences. These could mean different dosages to take into account bodyweight, or different medications to allow for allergies. Broadly, people with cystic fibrosis have had similar options available to them for treating their symptoms, although in many ways the multidisciplinary teams that care for them could be seen as a forerunner to what we now think of as personal healthcare.

Today, as science and technology advance, the offering for each person is becoming more adaptable to the individual.

Precision medicines

A perfect example of personalised healthcare is the emerging field of precision medicines. These are drugs that treat specific genetic mutations. There are already two precision medicines that work on specific cystic fibrosis mutations, Ivacaftor (known as Kalydeco) and Orkambi. However, these drugs only work for around 55% of people living with CF in the UK. Studies have shown them to be transformational in terms of reducing the amount of time people spend in hospital, and in the case of Kalydeco, the potential to dramatically improve lung function, but there are issues around making them available on the NHS – such drugs are expensive and so new that there isn’t any long-term data to support their use. 

The Trust is campaigning hard and offering solutions to this problem – check out our Stopping the Clock campaign to learn more.

There are other drugs like these in the pipeline, but they take many years to develop, test and get to market.

So, what else is there?

Another feature of personalisation is giving people more information about their health to enable them to take better control. For example, if people can measure some of their own symptoms at home, they will know before their clinicians do that their progress has slowed and perhaps they need to step up their physiotherapy, or make sure they’re adhering to their treatment regime. Being able to track their own data may give people enough insight to know when to take a break from working out, or try to eat more or get a bit more sleep.

Making it easier for people with cystic fibrosis to control their health is another huge step forward in a move towards personalised healthcare. At this year's UKCFC we spoke to Dr Benjamin Schwartz, a cartoonist for the New Yorker, about his work in narrative medicine.

How does the UK CF Registry play a part in this?

The UK CF Registry contains an impressive amount of clinical data from consenting patients, meaning that we can see how various treatments and interventions affect people of different genotypes, ages and with different complications. The Registry can also provide essential data to researchers and pharmaceutical companies running clinical trials to test or develop new treatments.

How can I help?

The UK CF Registry is a rich source of data that is almost unrivalled and makes cystic fibrosis a great place for personalised medicines and care to be developed. In the months to come we will be developing the way the Registry works, and looking to give you more access to your data, so that you can engage with the Registry and keep up to date about clinical trials you could be eligible for. Keep an eye on our coverage for new ways to get involved.

You can support our work by fundraising or making a donation. Together, we will create a brighter future for everyone with cystic fibrosis.


SmartCareCF

Find out more about the Trust's exploration of using technology to streamline the care and management of cystic fibrosis.

Take a peek

UK CF Registry

Take a look at the at-a-glance reviews of our annual Registry reports and find out more about the cystic fibrosis community in the UK.

Read on

CF Connect

Whatever challenges you're facing, if you need someone to talk to try our scheme for connecting people with cystic fibrosis.

Reach out