European clinical guidelines for Tourette Syndrome and other tic disorders: patients’ perspectives on research and treatment

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.