Category: Tremor
Objective: To identify and rank the top research priorities for people with Essential Tremor (ET), their carers and healthcare professionals using the James Lind Alliance (JLA) Priority Setting Partnership (PSP) approach.
Background: Research priorities for ET have not been systematically established. A JLA PSP provides a transparent, consensus-based method to determine future research priorities based on patient- and healthcare professional input.
Method: A Steering Group including people with ET, carers, a range of healthcare professionals with specialist interest in ET, and charity members was firstly established. An initial survey collected uncertainties about ET from a larger group of patients, carers and healthcare professionals. Submissions were collated and grouped. Out-of-scope and already-answered questions were removed after evidence-checking. A shortlist of uncertainties was generated and ranked by patients, carers and healthcare professionals, via an interim prioritisation survey. Final priorities were agreed using nominal grouping technique at an in-person workshop with balanced representation from patients, carers, and clinicians.
Results: We received 1840 uncertainties from 514 respondents. After evidence checking, 53 uncertainties were longlisted and 23 progressed to ranking following the interim prioritisation survey. The final top 10 research priorities were successfully agreed upon, ranging from 1st.to 10th.
Conclusion: This JLA PSP produced a ranked, stakeholder-driven Top 10 research priorities for ET. These priorities provide a clear, patient- and healthcare professional-supported agenda to inform researchers and funders and to align future trials and clinical research with outcomes that matter most to people affected by ET.
To cite this abstract in AMA style:
A. Macerollo, J. Gower, N. Pavese, M. Silverdale, T. Saifee, J. Farrell, S. Hough, S. Hourihan, K. Hull, S. Scotton, J. Panicker, A. Batla, N. Ray, S. Martin. Setting research priorities for Essential Tremor: a James Lind Alliance Priority Setting Partnership [abstract]. Mov Disord. 2026; 41 (suppl 1). https://www.mdsabstracts.org/abstract/setting-research-priorities-for-essential-tremor-a-james-lind-alliance-priority-setting-partnership/. Accessed October 1, 2026.« Back to 2026 International Congress
MDS Abstracts - https://www.mdsabstracts.org/abstract/setting-research-priorities-for-essential-tremor-a-james-lind-alliance-priority-setting-partnership/
