LD DBS

  • Research type

    Research Study

  • Full title

    Deep Brain Stimulation for Laryngeal Dystonia: A Pilot Study

  • IRAS ID

    350722

  • Contact name

    Marie Krueger

  • Contact email

    marie.krueger@nhs.net

  • Sponsor organisation

    University College London

  • Duration of Study in the UK

    2 years, 0 months, 1 days

  • Research summary

    Imagine that your voice breaks unpredictably and you sound strangled. People struggle to understand you when you speak. This becomes part of everyday life. This is what living with laryngeal dystonia (LD) is like.

    People with LD experience a significantly reduced quality of life that affects daily activities. Due to their altered voice, LD patients lose their jobs. They withdraw from social activity due to feelings of embarrassment and frustration, leading, in turn, to depression and isolation.

    Presently, there is no cure for LD. The first line of treatment for LD is botulinum toxin (“botox”) injection into the voice box through the neck skin. Unfortunately, its effect is short-lived, and LD patients have to undergo a repeat injection, every 3-4 months, lifelong. Its therapeutic effect is unpredictable as failed injections can occur and, worse, can stop working over the years.

    Deep Brain Stimulation (DBS) is an established treatment that improves symptoms and quality of life in patients with movement disorders including Parkinson’s disease, essential tremor, and dystonia. DBS is approved by NICE and commissioned by the NHS for its use in dystonia, including its use in LD. Whilst evidence on the efficacy of DBS for LD can be found in the current literature and is promising, the degree of benefit provided in improving voice quality for LD patients remains unknown, particularly because the number of reported patients is small (n=17).

    The present study is a pilot study to allow the design and successful implementation of a larger, well-designed and statistically rigorous randomised controlled trial (RCT) that will answer the research question: “What is the efficacy of DBS in LD patients?”.

  • REC name

    London - Surrey Borders Research Ethics Committee

  • REC reference

    25/LO/0545

  • Date of REC Opinion

    23 Jul 2025

  • REC opinion

    Favourable Opinion