Our aim was to fund research to enable people with cystic fibrosis to live longer, healthier lives, unlimited by the condition.
To achieve this, we have invested in research to allieviate and manage the symptoms and consequences of living with CF (‘research for today’) and to understand the CFTR gene defect and how to correct it (‘research for tomorrow’).
What we said we’d do
We said we’d fund research in a number of different ways:
Strategic Research Centres
You asked us to think big and harness global research expertise, rather than focusing on just the UK. In response, we developed the SRC programme to bring together researchers working around the world to collaborate to solve the issues that matter to people with cystic fibrosis.
Venture and Innovation Awards
We committed to bringing external funds into CF research by funding studies that turn research results in the lab into effective treatments in the clinic by bringing in additional external funds to achieve this.
We agreed to address research areas that are of importance to people with cystic fibrosis but are not well understood.
In all three programmes we also said we would:
- Increase the capacity and quality of clinical research in the UK
- Attract the brightest and the best early career researchers to work in cystic fibrosis
- Work with the CF community, to shape our research plans
Read our 2013-2018 research strategy to learn more about what we said we'd do.
What we’ve done
Strategic Research Centres
Funded 14 Strategic Research Centres, compromising 96 investigators, based in over 35 institutions in 14 countries.
Find out more about the topics we funded.
“From the second year on, we began proactively to focus on synergy between projects, which has led to substantial cross-fertilisation and a genuine feeling of collaboration, rather than a number of individual, siloed projects” Professor Jane Davies, principal investigator of SRC, Imperial College London.
“The SRC provides access to additional sites, resources and expertise that I wouldn’t have been able to access on my own” Dr Catriona Kelly, co-investigator of SRC, Ulster
Venture and Innovation Awards
Funded 56 Venture and Innovation Awards with universities, government funding bodies, other research charities and pharmaceutical and biotech companies. For every £1 we’ve spent, we’ve brought in almost £4 of external money into CF research.
Find out how we work with partners on our VIA page.
GI tract research
Launched two innovative research programmes on GI tract problems in CF, as a result of our research sandpit bringing together experts from a wide range of disciplines.
Find out more about this research.
Clinical Trials Accelerator Platform
Initiated our flagship Clinical Trials Accelerator Platform to increase the capacity and quality of clinical research.
Find out more about the Accelerator Platform.
Early career researchers
Attracted over 40 early career researchers to work in the field of cystic fibrosis research, as part of our Strategic Research Centres.
“The funding provided for PhD students is an excellent way to introduce new investigators into CF research. The collaborative network has been critical to providing additional support to students, which has resulted in better projects that are more thoroughly conducted and results are better interpreted” Dr Sanja Stanojevic, co-investigator of SRC, Hospital for Sick Children, Canada
Strategy Implementation Board
Formed our Strategy Implementation Board (now called the Research Grant Review Committee) including people from the community living with or affected by cystic fibrosis.
"The transparent environment of discussion and ideas in SIB meetings opens up vital lines of communication to enable the Trust to focus on the issues that matter deeply to us. I do think it's vital to include patient and parent input in the decisions that will shape our future, and it's extremely exciting to be a part of" Laura Taylor, member of SIB who has cystic fibrosis.
How our research has made a difference
Impact from research grows and reveals itself over time, and many of the projects we funded with your support in the last five years are still going on – we are constantly learning more. Here are some of the early breakthroughs to emerge from our research strategy:
Understanding Pseudomonas infection in people with cystic fibrosis
Up until recently, in order to develop treatments for killing the lung infection Pseudomonas aeruginosa, new drugs were tested on ‘lab strains’ of Pseudomonas, which have different properties to the strains in people. Now Professor Jane Davies at Imperial College London has a ‘bank’ of samples of Pseudomonas from people with CF to study in the lab. Any results will be more accurate as a result.
Another bug to add to the cross-infection list
People with CF are unable to meet one another because they may pass on infections that could be harmful to others with the condition. Precautions to prevent this happening are known as cross-infection guidelines, and the Trust’s Infection Control Group published the first of its guidelines in 1999.
Research from our ‘NTM SRC’ led by Professor Andres Floto at Cambridge University identified that the bacterial infection non-tuberculous mycobacterium, also known as ‘NTM’ or ‘M Abscessus’ can be passed on from person to person, and so needed to be added to the list of bugs on the cross-infection ‘list’. Previously it was thought people developed NTM from environmental sources.
New guidelines for diagnosing and treating NTM
NTM damages the lungs, causing a decline in lung function and if you have it, you are not eligible for a lung transplant. It’s hard to diagnose and extremely difficult to treat with antibiotics. To address this Professor Floto was part of the team that agreed the first international consensus guidelines on diagnosing and managing NTM, an important, practical guide for CF clinicians around the world.
These guidelines incorporated new cross-infection measures highlighted by the SRC research. The measures include a consideration of the airflow (air conditioning) within CF Units. This was included in the design of the airflow system in the new adult CF unit at Papworth Hospital.
Unexpected added value of the SRC structure
The Strategic Research Centres has additionally demonstrated a number of unexpected valuable outcomes. These are illustrated below.
Read more about the achievements of our research strategy in detail.
Our 2018-2023 research strategy is called ‘putting the person into personalised medicine’. It sets out how our research investments will focus on research to deliver treatment and care that is tailored to each individual with cystic fibrosis (CF).
Research in focus report
In June 2020 we published a Research in focus report on CF-related diabetes. The report explains the impact CF-related diabetes has on the lives of people with CF, what we’ve learnt from our funding so far, and our plans to continue to invest in this area of research.