H023 Reflective inquiry into the impact of COVID-19 restrictions on Enroll-HD registry at the walton centre liverpool: lessons learned

<h3>Background and Aim</h3> The COVID-19 pandemic, caused by SARS-CoV-2, significantly disrupted research activities globally. This study reflects on the experiences of research staff at The Walton Centre during the Enroll-HD study pause from March 2020 to August 2021 due to pandemic restrictions. We aimed to identify lessons learned and provide insights for future research continuity under similar constraints. <h3>Method</h3> Using narrative inquiry, we conducted face to face interviews with five research-active staff, including two consultant neurologists, two research nurses, and one HD lay advisor. The reflective process, adapted from Boud et al. (2013), focused on their observations and learning during the pandemic-imposed restrictions. <h3>Results</h3> The inquiry revealed that halting face-to-face interactions led to HD patients and their families feeling distanced from health services, resulting in heightened uncertainty about future health appointments. Despite these challenges, HD families valued the continued phone contact through the study, which provided crucial support amid the pandemic’s health impacts. Research staff highlighted the importance of maintaining collegial support within HD networks for their professional resilience. Key lessons included the research staff, alongside patients’ and families’ openness to using VOIP (Voice-Over Internet Protocol), video calls and assisted technologies for patient remote monitoring and assessments, suggesting potential for these tools in maintaining Enroll- HD study continuity. Additionally, the pandemic underscored a backlog of missed visits and reinforced the importance of research as a critical touchpoint for patient engagement and support. <h3>Conclusion</h3> The reflective inquiry underscores the necessity of patient-tailored assessments and the development of adaptive pathways to prioritize the health and well-being of research participants and staff during pandemics. The insights gained can help inform strategies to sustain Enroll- HD research activities and patient participation in future crises. <h3>Reference</h3> Boud, D., Keogh, R. and Walker, D., 2013. Reflection: Turning experience into learning. Routledge.