ECFS 2020 - Optimizing pharmaceutical care in cystic fibrosis

258    www.ecfs.eu OPTIMIZING PHARMACEUTICAL CARE IN CYSTIC FIBROSIS PATIENTS’ PRIORITIES AND THE CF PHARMACEUTICAL PIPELINE CHAPTER 14 4 Conclusions The above-mentioned studies show that there is alignment in the research priorities of the CF community. It is important that when priorities are set, that they are not just a tick box exercise, and that the priori- ties develop into actual research. Noordhoek et al . describe the impact that priority setting has had on the NCFS research program and the importance of a programmatic approach to project funding [5]. The CFF Insight study has a direct link within the CFF to impact on their research funding streams. The JLA CF exercise has worked hard to disseminate their priori- ties widely, worked closely with the UK’s CF Trust and held meetings with the UK’s largest research funder the National Insti- tute for Health Research (NIHR) who have since put out funding calls focusing on the CF priorities. It is important that groups try to work collaboratively to try to answer priorities effectively and efficiently. Co-production of research with patients and the wider CF community in all of the various stages of the research pipeline (discovery, development, clinical trials) will help ensure that patient priorities remain at the forefront of the process.

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