Below is a list of current research projects supported by Tourettes Action which we welcome you to participate in.

Research study seeking healthcare and education professionals supporting parents/children from ethnic minority groups with neurodevelopmental disorders

The research aims to understand the lived experience of families (parents/carers and young people) who are from an ethnic minority background and whose child has a diagnosed or possible neurodevelopmental disorder. We want to also explore the perceptions and experiences of health (e.g. GPs, mental health professionals, service managers) and education (e.g. teachers, special need co-ordinators) professionals in supporting these families. We hope that our findings will help us be better able to improve the way in which healthcare is delivered in the future.

Please click this link for more information and to take part

 

Participants needed to help inform the development of a feature film

A student at the University of Bristol is seeking support for her research project into TS. As a filmmaker with TS, Alanna has wanted to create a feature film about her experiences for a long time. Having identified that people with Tourette's are underrepresented in the media and often misunderstood, she is keen to do justice to not only her own story, but also to the wider Tourette's community. The research will help with script content and will be written with the consultation of members of the TS community, to ensure it respects the wishes and ideas within the community and portrays the syndrome accurately and authentically. 

Please click this link for more information and to take part

 

Functional Tic-Like Behaviours: Towards an Understanding of Young Peoples' Experiences

A trainee clinical psychologist at the University of Hertfordshire is researching the experiences of young people living with functional tics. These tics affect everyday life —whether at home, at school, or with friends—in ways that aren’t yet fully understood. This study will give young people a chance to share their story: the impact of the tics, what helps, and what doesn’t. Very little research on functional tics has focussed on young peoples’ actual experiences. By centring their voices, this study hopes to improve how doctors, teachers, and other adults understand and help young people, thereby raising awareness, reducing stigma, and enhancing support for functional tics.

Please click this link for more information and to take part

 

Self-stigma in Parents of Young People with Functional Neurological Disorders or Asthma

This study, from University of Oxford, aims to identify whether stigma awareness and self-stigma is higher in parents of young people with FND than parents of young people with a physical health condition (asthma). It also aims to understand whether parents of young people with FND experience higher levels of emotional distress than the control group, and whether this is mediated by levels of self-stigma.

Please click this link for more information and to take part

 

Professional’s experiences of working with children and young people diagnosed with functional tics

Researchers and Clinicians from University College London and Great Ormond Street Hospital are looking to recruit Healthcare professionals (registered with the relevant healthcare organisations/bodies) who have worked, or currently work, with children and young people diagnosed with functional tics. There has been a reported increase in young people experiencing functional tics yet there has not been much research into functional tics. Little is known about professionals experiences or working with children and young people living with functional tics. The study aims to qualitatively explore professionals experiences of working with this group of children and young people. 

Please click this link for more information and to take part

 

Help improve access to healthcare for young people with neurodevelopmental disorders

Researchers from the University of Nottingham are looking for young people and their parents/carers from ethnic minority groups with experience of tics or Tourette syndrome to join a patient and public involvement group. They are aiming to take previously researched and evidence-based online behavioural therapy intervention for tics in young people (known as ORBIT – Online Remote Behavioural Treatment for Tics study) and turn it into a patient-ready digital tool deliverable at scale within the NHS. Help shape this new intervention using your personal experiences and knowledge.

Please click this link for more information and to take part

 

Online learning resource for GPs

This project from the University of Nottingham aims to design an online intervention to improve GPs knowledge of tic disorders. Both healthcare professionals and families with tics report challenges in the care pathway for tics. Therefore, in order to meet the needs of people with tics as well as GPs accessing the resource, interviews about the experiences of healthcare from multiple perspectives will ensure the content is co-produced and relevant to all stakeholders. 

Please click this link for more information and to take part

 

Interoception and TS

Researchers at the University of Southampton are interested in finding out more about 'interoception' and how this might affect people with TS and other tic disorders.

Please click this link for more information and to take part

 

Lived Experience of TS 

Exploring the success of pharmacological vs art-based intervention

This study focuses on the lived experiences of 18–25-year-old adults with TS including their self-identity and approaches to self-care. It will investigate the economic and social pressures that individuals face due to their tics, including greater unemployment rates, more strain on social and familial relationships and avoidance of large public spaces. Participants will be asked to question on the pressure to supress tics, tic sensations, attitude to tics- whether humour is used as a coping strategy and intervention attitudes. Social and resultant economic pressures can reduce access to interventions, as well as people’s perceptions of and ability to engage with such interventions.

Please click this link for more information and to take part

 

Diversity and Productivity

The Inclusion Initiative at The London School of Economics have been awarded £2million by the Economics and Social Research council to investigate the relationship between Diversity and Productivity.

They are conducting interviews across banking & finance, professional services, technology, retail, manufacturing and public services to better understand what helps and hinders productivity in the workplace. Based on their findings from 200 people they seek to develop cost-effective interventions that can be tested and applied by firms to maximise diversity, inclusion and productivity. 

Please click this link for more information and to take part

 

Sleep Traits in Tourette Syndrome

The project from University of Reading  aims to investigate the potential relationships between morningness-eveningness (i.e.: chronotype/being more of a 'morning person' or more of an 'evening person'), delaying sleep (bedtime procrastination), rumination (overthinking), and traits within the Tourette Syndrome spectrum. Additionally, possible relationships with time spent using electronic devices, depression, sleep quality, and use of stimulants (caffeine, tobacco, or alcohol) will also be investigated.

Please click this link for more information and to take part

 

Exploring the urge to tic in TS

A new research study from University of Nottingham. The aim of this study is to explore which regions of the brain are involved in feelings of urge prior to tics using magnetic resonance imaging (MRI).

Please click this link for more information and to take part

 

Understanding the expression of everyday vocal and motor tics in adults

A cross-disciplinary team from the University of Hertfordshire is looking for adult participants (aged 18 or over) who have a confirmed diagnosis or have self-identified as having a Chronic Tic Disorder (such as Tourette Syndrome) to join an exploratory workshop. The workshop is a chance for researchers and participants to meet to co-propose how everyday tics may be captured in adults.

Please click this link for more information and to take part

 

Evaluating healthcare professionals experiences of assessing and treating tics in children and young people in the UK

The research team from the Faculty of Medicine & Health Sciences at University of Nottingham invite healthcare professionals to take part in their latest research study. This study is mapping the provision of tic services in different geographical regions of England and evaluating the barriers and facilitators to providing tic services for children and young people, experienced by healthcare professionals.

Please click this link for more information and to take part

 

Investigating the levels of social anxiety within the TS population

Student Researcher Alice Rhodes, from the University of Sussex invites you to take part in a study to further understanding of social anxiety processes in those with TS or a tic disorder.

This research will attempt to collect data on five specific cognitive processes associated with social anxiety to comprehensively answer the question of what effect self-focused attention processes have on post-event processing.

Please click this link for more information and to take part

 

 

You can read about previous research projects in our Archive section

Want to know who's behind the research?  Read about our researchers and the studies they are pioneering here