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, sex, 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.
May 2025: We’re Halfway There!
We’re now halfway through the survey period for the Essential Tremor Priority Setting Partnership (PSP), and we’ve had a fantastic response so far – thank you to everyone who has taken part!
The steering group will be meeting this month to plan how we can spread the word even further and ensure that as many people as possible have the opportunity to contribute their views. The more responses we receive, the better we can understand what really matters to people living with essential tremor, their families, and the professionals who support them.
August 2025: Summarising the Responses
We closed the first Essential Tremor PSP survey and were thrilled to see so many people take part. Every submission represented an important voice, from people living with tremor, to family members, to clinicians and researchers. All the individual questions were carefully reviewed and grouped into around 50 summary questions.
The steering group then came together to make sure these questions were unique, clear and understandable, capturing the main themes and uncertainties raised in the first survey. These summary questions will now form the basis of the next stage of the process.
October 2025: Checking Evidence
Before moving forward, we carried out an evidence check on each of the questions to find out whether any have already been answered by existing research. This stage ensures that the final priorities truly reflect gaps in knowledge, and are the questions that remain unanswered and most in need of future study.
November 2025: The Final Survey!
With evidence checking complete, the final survey is now live. We’re asking everyone, including people with essential tremor, their families, and healthcare professionals, to pick their Top 10 most important questions. These results will guide the next step: the final priority-setting workshop, where representatives from across the community will come together to agree on the Top 10 research priorities for essential tremor.
Next Steps…
The final survey will close in January 2026, marking the end of the second stage of the Essential Tremor PSP. Once the responses are collected, the results will be carefully reviewed to identify the questions most frequently ranked as important by patients, carers, and healthcare professionals.
The final prioritisation workshop will then take place in Manchester in February 2026. During this event, patients and healthcare professionals will come together to discuss and agree on the Top 10 research priorities for essential tremor, focusing on the questions that matter most to the people directly affected and those involved in their care.
All updates and the final Top 10 priorities will be shared on the James Lind Alliance website for Essential Tremor, so keep an eye out to see which questions made the list.