Abstract
The formation of a new umbrella organisation called Tics and Tourette Across the Globe (TTAG) representing Tic and Tourette Syndrome (TS) patient associations around the world has led to a clearer voice for patients with Tourette Syndrome (TS). An opportunity has been created for this group to bridge research, clinical work and shared decision-making between researchers, clinicians and patients across Europe, with the result of improving the treatment and management of TS. A survey was sent out to capture the patients’ perspective on research and treatment, and 2269 participants responded. 71% of participants reported they would prefer research into how to treat TS and/or make symptoms better. The inclusion of patients’ perspectives on research and treatment in the updated European clinical guidelines for TS and other tic disorders highlights the new opportunities that have been created for the participation of patients in the discussion of TS research.
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13 September 2021
A Correction to this paper has been published: https://doi.org/10.1007/s00787-021-01872-w
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Acknowledgements
Many thanks to all the patient associations around the world who helped with the survey and who came together to form the association Tics and Tourette Across the Globe (TTAG) representing Tic and Tourette Syndrome (TS) and the authors of the European Guidelines for all their help in putting this article together and also circulating the survey during the data collection. Many thanks also to the thousands of patients with TS and their families across Europe and the world who completed the survey.
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The original online version of this article was revised due to addition of article note.
This article is part of the focused issue “Update of the European clinical guidelines for Tourette Syndrome and other tic disorders”.
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Anderson, S.M., on behalf of Tics and Tourette Around the Globe (TTAG) representing Tic and Tourette Syndrome (TS) patient associations around the world. European clinical guidelines for Tourette Syndrome and other tic disorders: patients’ perspectives on research and treatment. Eur Child Adolesc Psychiatry 31, 463–469 (2022). https://doi.org/10.1007/s00787-021-01854-y
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DOI: https://doi.org/10.1007/s00787-021-01854-y