ECFS 2020 - Optimizing pharmaceutical care in cystic fibrosis

European Cystic Fibrosis Society   273  OPTIMIZING PHARMACEUTICAL CARE IN CYSTIC FIBROSIS ECFS-CTN: SHAPING SMALL GAINS INTO MAGIC BULLETS CHAPTER 15 [7] Unger JM, Vaidya R, Hershman DL, Minasian LM, Fleury ME. Systematic Review and Meta-Analysis of the Magnitude of Structural, Clinical, and Physician and Patient Barriers to Cancer Clinical Trial Participation. J Natl Cancer Inst. 2019;111(3):245-55. [8] Meeker-O’Connell A, Glessner C, Behm M, Mulinde J, Roach N, Sweeney F, et al. Enhancing clinical evidence by proactively building quality into clinical trials. Clinical trials (London, England). 2016;13(4):439-44. [9] Kent L, Reix P, Innes JA, Zielen S, Le Bourgeois M, Braggion C, et al. Lung clearance index: evidence for use in clinical trials in cystic fibrosis. J Cyst Fibros. 2014;13(2):123-38. [10] De Boeck K, van Koningsbruggen-Ri- etschel S. Safe ethical clinical trials in pre-school children with CF – more than just a token. In: The early cystic fibrosis years. ECFS; 2018. p. 259-74. [11] Rowbotham NJ, Smith S, Leighton PA, Rayner OC, Gathercole K, Elliott ZC, et al . The top 10 research prior- ities in cystic fibrosis developed by a partnership between people with CF and healthcare providers. Thorax. 2018;73(4):388-90. [12] Davies JC, Drevinek P, Elborn JS, Kerem E, Lee T, Amaral MD, et al. Speeding up access to new drugs for CF: Considerations for clinical trial design and delivery. J Cyst Fibros. 2019;18(5):677-84. [1] De Boeck K, Bulteel V, Tiddens H, Wagner T, Fajac I, Conway S, et al. Guideline on the design and conduct of cystic fibrosis clinical trials: the European Cystic Fibrosis Society-Clin- ical Trials Network (ECFS-CTN). J Cyst Fibros. 2011;10 Suppl 2:S67-74. [2] Goss CH, Mayer-Hamblett N, Kronmal RA, Ramsey BW. The cystic fibrosis therapeutics development network (CF TDN): a paradigm of a clinical trials network for genetic and orphan diseases. Advanced drug delivery reviews. 2002;54(11):1505-28. [3] Castellani C, Duff AJA, Bell SC, Heijerman HGM, Munck A, Ratjen F, et al. ECFS best practice guidelines: the 2018 revision. J Cyst Fibros. 2018;17(2):153-78. [4] van Koningsbruggen-Rietschel S. Disease-Specific Clinical Trial Networks: the Example of Cystic Fibrosis. Drug research. 2018;68(S 01):S21-s3. [5] Dobra R, Scott S, Davies JC, Simmonds NJ. Who and why; sharing our experiences of developing a standard operating procedure (SOP) to allocate screening slots for highly competitive cystic fibrosis trials. J Cyst Fibros. 2019;18(5):e45-e6. [6] Hagen NA, Stiles CR, Biondo PD, Cummings GG, Fainsinger RL, Moulin DE, et al. Establishing a multicentre clinical research network: lessons learned. Current oncology (Toronto, Ont). 2011;18(5):e243-9.

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