Priority Setting for Essential Tremor:
Progress so far…
Since launching the Essential Tremor Priority Setting Partnership (PSP) in late 2024, we’ve made exciting progress towards identifying the research questions that matter most to people affected by essential tremor. This blog post shares some key updates and milestones from the past few months – including the work we’ve done with our fantastic steering group and where we’re heading next.
November 2024: Our First Steering Group Meeting
In November, we brought together a diverse and passionate steering group for the first time. The group includes healthcare professionals (neurologists, GPs, occupational therapists, physiotherapists, geriatricians), individuals living with essential tremor, and representatives from the National Tremor Foundation. Together, we laid the groundwork for the partnership by discussing the aim, objectives, and scope of our work.
Aims
The aim of the essential tremor PSP is to identify the unanswered questions about living with essential tremor from patient, carer and clinical perspectives and then prioritise those that patients, carers and clinicians agree are the most important for research to address.
Objectives
- To agree by consensus a prioritised list of those uncertainties, for research
- To publicise the results of the PSP and process
- To take the results to research commissioning bodies to be considered for funding.
Scope
- How symptoms (both physical and emotional) affect daily life
- Causes, diagnosis, and how the condition changes over time
- The effectiveness of therapies
- Inequalities in care,
- Use of technology
- Economic impact
- Differences in experience based on age, gender, or tremor type
- For a full list of our scope, take a read of the Protocol on the JLA website.
February 2025: Getting the Survey Ready
In February, we focused on finalising the survey that will help us gather the questions people with essential tremor, carers, and healthcare professionals most want answered. The survey will be available both online and in hard copy, to make it as accessible as possible.
We also began planning how to share the survey far and wide across the UK. As well as circulating it among healthcare professionals, we’ll be inviting patients in movement disorder clinics to take part, and working with community groups and support networks to reach people living with essential tremor in different regions. The more voices we hear from, the better – so we’re doing everything we can to make sure everyone affected by essential tremor has a chance to contribute.
March 2025: The Survey Launch
This month marks a major milestone – the launch of our survey! We will gather the questions, concerns, and uncertainties that people affected by essential tremor want answered through research. Whether you live with the condition, care for someone who does, or support patients in a clinical setting, your input will help shape the future of essential tremor research.
Alongside the launch, we’re holding our next steering group meeting to focus on outreach – how we can spread the word about the survey even further. We’ll be working together to make sure it reaches people in all corners of the UK, across clinical settings, community groups, and online platforms. Every response matters.
Next Steps…
Once the survey closes later this year, we’ll begin the exciting (and detailed!) process of reviewing all the responses. Every submission will be carefully read and grouped into common themes. From this, we’ll create a long list of around 60 questions that reflect the priorities for future research.
This long list will then be shared in a second survey, where people will be invited to vote on the questions they feel are most important. The highest ranked questions – around 25 – will make up the shortlist. Finally, in a dedicated workshop later this year, a group of patients, family, and professionals will work together to agree on the final Top 10 research priorities.
This Top 10 will be shared widely and used to influence future research funding and direction — making sure that essential tremor research focuses on the areas that matter most.