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

Experiences of Working with Tics and Tourette syndrome: Tourette’s Employment Passport

This study explores lived experiences of working with tics, Tourette syndrome, and other tic disorders (including functional tics). Your responses will directly inform and refine the design and content of the Tourettes Action Employment Passport - a practical tool designed to support people with tics to access work, stay in work, and thrive in their roles.

Please click here for more information and to take part

 

Exploring Tic-Related Pain, Injury & Protective Clothing Design

This survey is part of Tic Attire, a co-produced project exploring the idea of protective, sensory-considered clothingdesigned to help reduce pain and injury related to tics. The project is being shaped directly by people with lived experience, and your voice is essential.

Please click here for more information and to take part

 

Developing an Online Learning Resource, Co-Designed with GPs

Researchers at the University of Nottingham are working with Tourettes Action to evaluate our online learning resource that has been specially designed for GPs. Following a round of feedback from GPs, they are now ready to recruit 50 more GPs to participate in a feasibility survey study to assess the usability and appropriateness of the newly modified resource. A subsample of 10 GPs will be invited to interview about their experience using the resource. 

Please click here for more information and to take part

 

Investigating the Tic Signal in those with Chronic Tic Disorders and Autism

Researchers are focusing on the premonitory urge in this project because of its importance in tic disorders. Previous research has suggested that different groups experience the premonitory urge differently, such as age, gender, and those with additional comorbidities. Hence, it is important to explore the experience of the premonitory urge in groups of individuals with different comorbidities because the experience could differ, which will have an impact on how treatment is delivered to support people with tics.

Please click here for more information and to take part

 

How do animals benefit individuals with Tourette syndrome?

Individuals with Tourette’s can find it difficult to access the help available to them, or they may become ashamed to ask for help as a result of fear or judgement from others, e.g. getting a service or emotional support dog. From this research, the hope that the results may show that individuals find great comfort in being around animals, therefore widening the understanding of how important it can be for individuals to have access to this type of support.

Please click here for more information and to take part

 

Optimising Therapy for Neurodivergent Adults: Reasonable Adjustments and Special interests and their interplay in therapy and quality of life

This study aims to help enhance therapy for individuals with neurodevelopmental conditions. The project was co-designed with people who have lived experience, ensuring their voices shaped every aspect, from accessibility to the Qualtrics layout and the creation of an explanatory video, making it as accessible as possible, providing the information in both written and video formats so people can choose.

Participants need a diagnosis or self-identification with a neurodevelopmental condition such as ADHD, dyspraxia, dyslexia, Tourette syndrome, autism, dyscalculia, or dysgraphia and some experience receiving therapy or mental health support, at any point in their life.

Please click here 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

 

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

 

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

 

SATURN - Stimulant medication for ADHD and Tics – Understanding Response versus Non-stimulants

Researchers at the University of Nottingham are looking for participants for their latest project. The SATURN study will compare the stimulant medication usually prescribed for ADHD, with the non-stimulant medication usually prescribed for tics to identify the best treatment for children/young people with both ADHD and tics.

Please click this link for more information and to take part

 

 

You can read about previous research projects in our Archive section