Canadian epilepsy priority-setting partnership: Toward a new national research agenda

Singh, Amaya M.; Woelfle, Rebecca; Chepesiuk, Rachel; Southward, Carla; Antflick, Jordan; Cowan, Katherine; Hum, Kathryn; Ng, Marcus; Burneo, Jorge G.; Martí, Ana Suller

doi:10.1016/j.yebeh.2022.108673

Cited by 5 publications

(4 citation statements)

References 32 publications

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“…After removal of duplicates, 207 articles were screened by title and abstract, and 29 full‐text articles were assessed for eligibility. From those, we identified a total of 21 eligible publications that could be considered research agendas related to a range of neurological items and subspecialties [12–33]. The main reasons for exclusion in the title and abstract stage were the following: nonneurological topics, conference abstracts, informal or nonsystematic reviews, and opinion papers.…”

Section: Resultsmentioning

confidence: 99%

A strategic neurological research agenda for Europe: Towards clinically relevant and patient‐centred neurological research priorities

Boon,

Lescrauwaet,

Aleksovska

et al. 2023

Euro J of Neurology

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Background and purposeNeurological disorders constitute a significant portion of the global disease burden, affecting >30% of the world's population. This prevalence poses a substantial threat to global health in the foreseeable future. A lack of awareness regarding this high burden of neurological diseases has led to their underrecognition, underappreciation, and insufficient funding. Establishing a strategic and comprehensive research agenda for brain‐related studies is a crucial step towards aligning research objectives among all pertinent stakeholders and fostering greater societal awareness.MethodsA scoping literature review was undertaken by a working group from the European Academy of Neurology (EAN) to identify any existing research agendas relevant to neurology. Additionally, a specialized survey was conducted among all EAN scientific panels, including neurologists and patients, inquiring about their perspectives on the current research priorities and gaps in neurology.ResultsThe review revealed the absence of a unified, overarching brain research agenda. Existing research agendas predominantly focus on specialized topics within neurology, resulting in an imbalance in the number of agendas across subspecialties. The survey indicated a prioritization of neurological disorders and research gaps.ConclusionsBuilding upon the findings from the review and survey, key components for a strategic and comprehensive neurological research agenda in Europe were delineated. This research agenda serves as a valuable prioritization tool for neuroscientific researchers, as well as for clinicians, donors, and funding agencies in the field of neurology. It offers essential guidance for creating a roadmap for research and clinical advancement, ultimately leading to heightened awareness and reduced burden of neurological disorders.

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Section: Resultsmentioning

confidence: 99%

A strategic neurological research agenda for Europe: Towards clinically relevant and patient‐centred neurological research priorities

Boon,

Lescrauwaet,

Aleksovska

et al. 2023

Euro J of Neurology

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show abstract

“…Existing cohorts demonstrate that patient-centered partnerships strengthen research and can help ensure that research efforts better reflect the needs of the epilepsy community. 8 The study's strengths should be viewed in light of its limitations, such as the homogeneous demographic profile of the respondents. The recruitment strategy may have resulted in selection bias toward caregivers with the highest level of engagement in advocacy organizations on social media, limiting generalizability to broader populations.…”

Section: Discussionmentioning

confidence: 99%

“…Strengths of this study include our engagement with stakeholders who hold shared interests in improving the landscape of epilepsy care and research, including families of children with epilepsy. Existing cohorts demonstrate that patient‐centered partnerships strengthen research and can help ensure that research efforts better reflect the needs of the epilepsy community 8 . The study's strengths should be viewed in light of its limitations, such as the homogeneous demographic profile of the respondents.…”

Section: Discussionmentioning

confidence: 99%

A question prompt list for sudden unexpected death in epilepsy

Bansal

Pallotto

Shellhaas

et al. 2023

Annals of the Child Neurology Society

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“…Following the Canadian PSP, 8 the UK Epilepsy PSP—funded and led by Epilepsy Research UK—was launched in 2021. The UK Epilepsy PSP was a once-in-a-generation, national consensus that followed the JLA methodology to identify the epilepsy community's Top Ten priorities for research into epilepsy.…”

mentioning

confidence: 99%

What the Top Ten epilepsy research priorities mean for the UK research ecosystem

Norton,

Smeaton,

Twohig-Bennett

et al. 2024

eBioMedicine

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Canadian epilepsy priority-setting partnership: Toward a new national research agenda

Cited by 5 publications

References 32 publications

A strategic neurological research agenda for Europe: Towards clinically relevant and patient‐centred neurological research priorities

A strategic neurological research agenda for Europe: Towards clinically relevant and patient‐centred neurological research priorities

A question prompt list for sudden unexpected death in epilepsy

What the Top Ten epilepsy research priorities mean for the UK research ecosystem

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