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The following is a summary of “Lessons learned for pandemic preparedness in the neurodegenerative research and clinical fields: an advice report based on Parkinson’s disease as an example,” published in the December 2024 issue of Neurology by Splinter et al.
A sustainable pandemic preparedness strategy is essential to ensure equitable healthcare access for individuals with neurodegenerative diseases, such as Parkinson’s disease (PD).
Researchers conducted a prospective study to develop pandemic preparedness recommendations for research and clinical care related to neurodegenerative diseases.
They established an international collaboration between researchers, clinicians, and patient representatives from the Netherlands, Poland, and the United Kingdom. The team co-created a pandemic preparedness plan informed by lessons learned from individuals affected by or working in the field of PD and 4 population-based studies conducted during the COVID-19 pandemic (March-November 2023), 2 hybrid meetings were held in Bristol (United Kingdom) and Rotterdam (Netherlands), alongside 2 online meetings.
The results showed that research recommendations focused on 3 core factors for questionnaire design: using existing, validated questions; second, ensuring questionnaire adaptability and flexibility; and last, testing questionnaires both within and outside the research group. The study also addressed participant burden, advocated for robust data-sharing practices, and emphasized the need for regulatory measures beyond the COVID-19 pandemic. Clinical perspectives included strategies to mitigate social isolation, virtual vs. in-person consultations challenges, and systemic changes to prevent moral injury in healthcare professionals.
They concluded that the pandemic preparedness plan for PD provided essential research and clinical recommendations with broader relevance to neurodegenerative diseases and the general population.
Source: bmcneurol.biomedcentral.com/articles/10.1186/s12883-024-03975-8
