In 2013, the Cystic Fibrosis Trust published its five-year strategy for research. This was developed following consultation with the cystic fibrosis (CF) community and stakeholders.
The strategy developed some new and provocative ways of funding research to maximise the impact on people with cystic fibrosis. It was created to maximise the impact of life sciences research for people with cystic fibrosis. Creating partnerships was the underlying theme, promoting multidisciplinary and multinational clusters of academic scientists and partnering with other funding agencies.
The partnerships focus also included developing a specific funding stream that allows us to partner projects with the biotechnology sector. The thinking behind this is simple - it is the biotechnology sector that creates innovation in drug discovery and development.
At the time we embarked on this strategy, this engagement of a charity with the industry was a new concept in the UK, although it is pretty standard in the USA. We needed to learn from the successes of the Cystic Fibrosis Foundation.
The partnering approach has paid off – literally. Every £1 the Trust has invested in our Venture and Innovation Awards programme has been matched by £3 from funding from outside of the Trust. This is what we mean when we talk about giving ‘more bang for your buck’ – making the money that you raise or donate go further.
That five-year strategy is now coming to a close. Looking back over the last four years, our approach of partnering with industry was slow to start but has now matured into some interesting projects and we continue to scout for new opportunities. This week I am attending the North American CF Conference and my role here is to build and reinforce existing relationships and to keep my eyes open for new opportunities.
The research strategy we are developing now will take us into the next five years. As part of this, the Trust is developing a new corporate engagement strategy and digital health strategy.
We are living in extraordinary times in the area of CF research. We need a new and imaginative strategy that meets the needs of all people with CF; from parents with a child newly diagnosed with CF to someone who has lived their life combating the condition and now on the lung transplant list.
I need your help. We recently posted various consultations to engage the CF, research and clinical communities in helping develop the strategy that will take us to 2023. What could life with CF look like in five years’ time, and what do we need to do now to take us there? If you haven’t taken part already, this is your chance to share your thoughts.
Are you a member of the CF community? Share your views now!
Are you a researcher? Take part in our research consultation.
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