Splinter Marije J, Henderson Emily J, Ben-Shlomo Yoav, Darweesh Sirwan K L, Sowa Pawel, Wolters Frank J, Velek Premysl, Meijerink Hannie J E M, Bakx Paulus, Ikram M Arfan, de Schepper Evelien I T, Ikram M Kamran, Licher Silvan
Department of Epidemiology, Erasmus University Medical Centre, Rotterdam, The Netherlands.
Department of Population Health Sciences, Bristol Medical School, University of Bristol, Bristol, UK.
BMC Neurol. 2024 Dec 5;24(1):473. doi: 10.1186/s12883-024-03975-8.
A sustainable pandemic preparedness strategy is essential to ensure equitable access to healthcare for individuals with neurodegenerative diseases. Moreover, it is vital to provide clinicians and researchers in the neurodegenerative disease fields with resources and infrastructure to ensure continuity of their work during a (health) crisis.
We established an international collaboration between researchers, clinicians, and patient representatives from the Netherlands, Poland, and the United Kingdom. We co-created a pandemic preparedness plan primarily informed by examples from those affected by or working in the field of Parkinson's disease, with potential application to other neurodegenerative diseases or the general population. This plan builds upon insights and experiences from four population-based studies during the COVID-19 pandemic. Between March and November 2023, we organised two hybrid meetings in Bristol (United Kingdom) and Rotterdam (the Netherlands), and two online meetings.
Research recommendations included three core factors in questionnaire design during health crises: 1) using existing, validated questions, 2) questionnaire adaptability and flexibility, and 3) testing within and outside the research group. Additionally, we addressed burden of participation, and we advocated for robust data sharing practices, underlining the importance of regulatory measures extending beyond the COVID-19 pandemic. We also shared clinical perspectives, including strategies to mitigate social isolation; challenges in virtual versus in-person consultations; and systemic changes to recognise and prevent moral injury in healthcare professionals.
In this pandemic preparedness plan, we provide research and clinical recommendations tailored to the field of Parkinson's disease, with broader relevance to other neurodegenerative diseases and the general population. This establishes an essential framework for setting up new studies and safeguarding research and clinical practices when a new pandemic or other (health) crisis emerges.
可持续的大流行防范策略对于确保神经退行性疾病患者公平获得医疗保健至关重要。此外，为神经退行性疾病领域的临床医生和研究人员提供资源和基础设施，以确保他们在（健康）危机期间工作的连续性也至关重要。
我们在来自荷兰、波兰和英国的研究人员、临床医生和患者代表之间建立了国际合作。我们共同制定了一项大流行防范计划，主要参考帕金森病领域患者或从业者的实例，该计划可能适用于其他神经退行性疾病或普通人群。该计划基于2019冠状病毒病大流行期间四项基于人群的研究的见解和经验。在2023年3月至11月期间，我们在英国布里斯托尔和荷兰鹿特丹组织了两次混合会议以及两次线上会议。
研究建议包括健康危机期间问卷设计的三个核心因素：1）使用现有的、经过验证的问题；2）问卷的适应性和灵活性；3）在研究组内外进行测试。此外，我们讨论了参与负担问题，并倡导强有力的数据共享做法，强调监管措施在2019冠状病毒病大流行之外的重要性。我们还分享了临床观点，包括减轻社会隔离的策略；虚拟咨询与面对面咨询的挑战；以及认识和预防医护人员道德伤害的系统性变革。
在本大流行防范计划中，我们提供了针对帕金森病领域的研究和临床建议，对其他神经退行性疾病和普通人群具有更广泛的相关性。这为开展新研究以及在新的大流行或其他（健康）危机出现时保障研究和临床实践建立了一个重要框架。
