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.

代表世界各地的抽动症和抽动秽语综合征 (TS) 患者协会的新伞形组织的成立，称为全球抽动症和抽动秽语 (TTAG)，使抽动秽语综合征 (TS) 患者的声音更加清晰。为该小组创造了一个机会，可以在欧洲的研究人员、临床医生和患者之间架起研究、临床工作和共同决策的桥梁，从而改善 TS 的治疗和管理。发送了一项调查以了解患者对研究和治疗的看法，有 2269 名参与者做出了回应。71% 的参与者报告说他们更愿意研究如何治疗 TS 和/或改善症状。