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Review
. 2022 Mar;31(3):463-469.
doi: 10.1007/s00787-021-01854-y. Epub 2021 Aug 9.

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

Seonaid Morag Anderson  1 ; Tics and Tourette Around the Globe (TTAG) representing Tic and Tourette Syndrome (TS) patient associations around the world
Affiliations
Review

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

Seonaid Morag Anderson et al. Eur Child Adolesc Psychiatry. 2022 Mar.

Erratum in

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.

Keywords: European Society for the Study of Tourette Syndrome (ESSTS); Guidelines; Patients; Patient and Public Involvement (PPI); Research; Tics; Tics and Tourette Around the Globe (TTAG); Tourette Syndrome.

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References

    1. Oliver S (2006) Patient involvement in setting research agendas. Eur J Gastroenterol Hepatol 18:935–938 - DOI
    1. Hardavella G, Bjerg A, Saad N, Jacinto T, Powell P (2015) How to optimise patient and public involvement in your research: Doing science. Breathe (Sheff) 11(3):223–227. https://doi.org/10.1183/20734735.007615 - DOI
    1. Abma TA, Nierse CJ, Widdershoven GA (2009) Patients as partners in responsive research: Methodological notions for collaborations in mixed research teams. Qual Health Res 19:401–415 - DOI
    1. Ennis L, Wykes T (2013) Impact of patient involvement in mental health research: longitudinal study. British J Psych 203(5):381–386. https://doi.org/10.1192/bjp.bp.112.119818 (Epub 2013 Sep 12) - DOI
    1. Abma TA, Broerse JE (2010) Patient participation as dialogue: Setting research agendas. Health Expect 13:160–173 - DOI

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