Abstract
Objectives: Although clinical research is an important part of the management of people with cystic fibrosis (pwCF), the COVID-19 pandemic has had a profound impact on research activity, especially that which involves such clinically extremely vulnerable groups. Methods: We describe our experience with continuing CF research activity during the pandemic crisis at our large adult unit (~350 pwCF). We use a bespoke CF single-person research suite that includes a lounge area incorporating hotel facilities, separate from the main clinical buildings. Results: At the start of the COVID-19 pandemic, 104 pwCF in 6 active trials (4 requiring physiologic tests) wished to carry on with their routine trial visits. One study (54 participants) was put on hold at the request of the sponsor. All pwCF were risk assessed before attending to comply with guidelines. From March to December 2020, we carried out 3 sweat tests,15 blood tests and 50 spirometry tests in the suite, and 50 research imaging and 10 full pulmonary function tests within another setting. All procedures were carried out using appropriate personal protective equipment (PPE), with staff fit-tested to perform spirometry safely. Feedback from pwCF indicated that they felt safe and secure in addition to being supported. Conclusion: With the implementation of measures such as face coverings, health screens, and social distancing, most research activity within CF presents a relatively low risk for individuals despite the challenges faced. Having a bespoke facility allowed us to ensure the safety of research participants, minimise the risk of COVID-19 community spread, including spread to the researchers themselves and the avoidance of interactions with non-research staff. We continue to adapt our strategies to make the best out of available resources and opportunities.
Published Version
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