We are thrilled to announce the launch of the Essential Tremor Priority Setting Partnership, an exciting initiative aimed at shaping the future of essential tremor research and care. The Priority Setting Partnership will be facilitated by the James Lind Alliance, a non-profit that helps patients, carers, and healthcare professionals to identify the most important unanswered questions for research.

This Priority Setting Partnership, funded by Manchester Metropolitan University, is steered by a committee of people who live with essential tremor from diverse backgrounds, charities such as the National Tremor Foundation, and neurologists, surgeons, GPs, and healthcare practitioners from across the UK.

Here’s what it’s all about and why it matters.

What is a priority setting partnership?

A Priority Setting Partnership is a collaborative process that seeks insights from patients, carers, and health care professionals to identify and prioritise unanswered questions about a specific health condition. The James Lind Alliance have decades of experience in bringing together these groups of people to ensure that Priority Setting Partnerships identify the unmet needs that matter most to those directly affected by the condition. By giving people who live with essential tremor an equal voice with the professionals who manage their care, Priority Setting Partnerships can be used to direct funding towards research that addresses real-world needs.

Why essential tremor?

Essential tremor is the most common movement disorder globally, yet it remains under-recognized and misunderstood. The condition impacts individuals across a wide age range, but is more prevalent in older age groups. An essential tremor diagnosis can often coincide with critical phases of personal and professional life, making effective management all the more urgent.

Despite its prevalence, essential tremor is frequently misdiagnosed, sometimes as Parkinson’s disease. The first-line treatments, typically beta blockers or anti-epileptic drugs, are effective for only about half of patients. 

When people with essential tremor are asked about their condition they frequently describe a poor response to the available treatments, and therefore learn to “live with it”. For many, their tremor does not stop them from enjoying life. For others however, the tremor is disabling, limiting how well they can carry our the activities of daily life. A collection of experiences from people of all ages can be found here.

We don’t believe ‘living with it’ should be the only option. More research is needed so we can create better treatments. The Priority Setting Partnership we are now working on is needed to ensure that future research is focused on the needs of people who live with essential tremor.

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The aims of the essential tremor Priority Setting Partnership

Our first steering committee meeting was held in Dec 2024. At the meeting, we identified the following three aims:

  • Identify gaps in current knowledge and understanding of essential tremor.
  • Highlight the most pressing unanswered questions about the condition’s impact and treatment.
  • Ensure the priorities of those living with essential tremor and the healthcare professionals who look after patients with essential tremor are reflected in future research agendas.

Why now?

Essential tremor is a complex condition with significant variability in its presentation and impact. From diagnostic challenges to the limited effectiveness of current treatments, there is a pressing need to bridge the gap between what we know and what people who live with the condition truly need. With a growing recognition of the condition’s burden and the challenges posed by modern life, as well as new treatment options on the horizon, this Priority Setting Partnership comes at a pivotal moment. By uniting voices across the essential tremor community, we aim to lay the foundation for a brighter future in essential tremor care and research.

What happens next?

The essential tremor Priority Setting Partnership will follow a structured process over 18-months in collaboration with the James Lind Alliance. We will ensure this process is inclusive, transparent, and impactful.

Following the first steering committee meeting, we are now working on identifying a long list of priorities that will guide future research. Once created, we will ask as many people who live with essential tremor to help us understand which ones are most important to them.

If you would like to be notified when this survey becomes available, please send us an email and let us know.

We invite everyone affected by essential tremor – whether as a patient, carer, or health care professional – to get involved. Your voice matters, and together, we can shape a research agenda that truly reflects the needs and priorities of the community.

For more information or to get involved, please visit our page on the JLA website or contact us via email (Dr Sarah Martin: This email address is being protected from spambots. You need JavaScript enabled to view it.).

Further reading