Abstract
Background: The coronavirus pandemic is having a profound impact on non-COVID-19 related research, including the delivery of clinical trials for patients with Parkinson's disease.Objectives: A preliminary investigation to explore the views of Parkinson's disease (PD) patients, with and without experience of psychosis symptoms, and carers on the resumption of clinical research and adaptations to trials in light of COVID-19.Methods: An anonymous self-administered online survey was completed by 30 PD patients and six family members/carers via the Parkinson's UK Research Support Network to explore current perceptions on taking part in PD research and how a planned clinical trial for psychosis in PD may be adapted so participants feel safe.Results: Ninety-one percent of respondents were enthusiastic about the continuation of non-COVID-19 related research as long as certain safety measures were in place. Ninety-four percent stated that they would be happy to complete assessments virtually. However, they noted that care should be taken to ensure that this does not exclude participants, particularly those with more advanced PD who may require assistance using portable electronic devices. Regular and supportive communication from the research team was also seen as important for maintaining the psychological well-being of participants while taking part in the trial.Conclusions: In the era of COVID-19 pandemic, standard approaches will have to be modified and rapid adoption of virtual assessments will be critical for the continuation of clinical research. It is important that alongside the traditional methods, new tools are developed, and older ones validated for virtual assessments, to allow safe and comprehensive assessments vital for ongoing research in people with Parkinson's.
Highlights
The current coronavirus disease 2019 (COVID-19) pandemic is having a huge impact on healthcare systems and broader society across the world
This study reports the results of an online survey that was developed together with a group of Patient and public involvement (PPI) advisors to explore Parkinson’s disease (PD) patients’ views on taking part in research during the current pandemic and how a planned clinical trial for people with Parkinson’s disease psychosis (PDP) may be best adapted so that participants feel safe
The survey consisted of 19 questions: six questions gathering details about survey respondents, seven questions related to general perceptions about taking part in research at the current time, followed by five more specific questions about adaptations to the planned clinical trial investigating psychosis in PD
Summary
The current coronavirus disease 2019 (COVID-19) pandemic is having a huge impact on healthcare systems and broader society across the world. Most other research has been paused or significantly reduced, including many clinical trials for PD [7, 8]. While this is understandable due to concern for the safety of trial participants and research staff, it is vital that trials resume in order to meet the unmet clinical needs for people with PD [9]. The coronavirus pandemic is having a profound impact on non-COVID-19 related research, including the delivery of clinical trials for patients with Parkinson’s disease
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