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Cystic Fibrosis Trust
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Our work with the pharmaceutical industry

Our mission is to create a world where being born with cystic fibrosis (CF) no longer means a lifelong burden of care and an early death, when everyone living with the condition will be able to look forward to a long, healthy life.

Partnerships between medical research charities and the pharmaceutical industry can help us deliver that mission and bring huge benefits to patients – from accelerating the development of new drugs, to ensuring the safety and improvement of existing treatments.

We run flagship programmes involving industry partners:

Clinical Trials Accelerator Platform

The Clinical Trials Accelerator Platform is a UK-wide initiative to bring together CF centres to increase participation and access to CF clinical trials. This initiative is building the infrastructure and funding additional research capacity to support the pharmaceutical industry with commercial clinical trial delivery.

As part of our collaboration with industry, the Trials Accelerator offers a centralised feasibility service to support pharmaceutical companies with identification of suitable CF centres for clinical trial delivery. In 2018/19 the Trials Accelerator feasibility service was utilised for 11 clinical trials, generating an income of £18,500 for the Clinical Trials Accelerator Platform.

The Trials Accelerator also offers a protocol review service to support pharmaceutical companies with the design, feasibility and planning of clinical trials. In 2018/19 the protocol review service was utilised by two pharmaceutical companies, generating an income of £18,500.

The UK Cystic Fibrosis Registry

Long-term studies of drugs available to people with CF across the UK are conducted by the Trust’s UK CF Registry. The cost of the Registry team producing study reports for the Regulator of medicinal products is covered by pharmaceutical companies holding the Market Authorisation for these medicines. You can read more about our work with industry to make medicines safer.

In 2018/19 Cystic Fibrosis Services Ltd, the Trust’s trading subsidiary, received £1.3 million in fees for this service. There were four long-term commercial contracts for Phase IV pharmacovigilance studies in place throughout the year with Chiesi, Vertex and Teva.

Venture & Innovation Awards (VIAs)

Venture and Innovation Awards support transformational and innovative research projects by providing financial support and bringing funding into the field of CF from external sources, including the pharmaceutical industry.

On average, for every pound spent by the Trust to fund a VIA, an additional four pounds is leveraged. In 2018/19 we invested in two new research projects with Diagnostig Ltd and Owlstone Medical Ltd which leveraged an additional £208,000.

Sponsorship and donations

Sponsorship from pharmaceutical companies helps pay for our annual UK Cystic Fibrosis Conference, enabling us to stage a free event to keep healthcare professionals and people affected by CF informed on all aspects of clinical care and research.

In 2018/19, we received £51,755 to help pay for the costs of the UK Cystic Fibrosis Conference and would like to thank the following pharmaceutical companies: Chiesi, Galapagos, Gilead, Proteostasis and Vertex.

In 2018/19 we also received a Vertex Circle of Care award of £76,052 for a project to provide accessible and personalised information on life expectancy in CF for use in clinic and to enhance reporting from the UK CF Registry.

Our guiding principles for working with the pharmaceutical industry

We do not do anything that prejudices the interests of people affected by CF and we will withdraw from any arrangement we believe to be against these interests, which may prejudice our mission and independence or damage our reputation.

We only enter into partnerships and contracts with pharmaceutical companies where it is in our charitable interests to do so, and we are always transparent when we do. All partnerships are based on the principles of integrity and supporting our mission and strategic aims. We never accept funding from pharmaceutical companies to support campaigning activities.

We do not promote or recommend specific treatments to individuals or influence prescribing practices for specific branded medicines.

Partnerships will not compromise the Trust’s independent status and pharmaceutical companies with whom we enter into partnership will comply with ABPI code of practice when applicable.

We maintain our editorial independence so we are free to talk positively or negatively about pharmaceutical companies and their products.

Research we're funding

The Trust is committed to funding and supporting cutting-edge research to find new and better treatments for cystic fibrosis. Take a look at some of that work and the progress that is being made.

What is cystic fibrosis?

Find out more about cystic fibrosis, its diagnosis and how it is treated, as well as useful links to our publications and other organisations who can help.

More information

If you would like to find out more about any of our campaigns, publications or anything else, get in touch and we'll be happy to help.