Dystonia UK supports the work of researchers and students to help further understand dystonia and its impact on individuals.

We work to support research projects in a number of different areas including research into the causes, treatments and management of dystonia. Recently, Dystonia UK has been working with students on the Clinical Psychology doctoral course at Lancaster University to support their research projects focused on the psychological effects of dystonia.

Current studies look to understand the impact of being diagnosed with neck dystonia and the impact of neck dystonia on social interactions with family, friends and work colleagues and on an individual’s social identity, topics we know are of importance to the dystonia community. From studies like these, we can better understand the support our community needs and we can help make recommendations for improvements in NHS services.

An essential aspect of these studies is to understand from people living with dystonia what their experiences have been. Both studies are looking for adult participants with neck dystonia to interview. Below you can read more about the individual studies and how to get involved.

Study title: Navigating the social world with neck dystonia: An interpretive phenomenological analysis

Study title: The experience of being diagnosed with neck dystonia.

Published: 29th January 2022