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  • International Tourette's Syndrome Deep Brain Stimulation Registry and Database

    Final Number:

    Alon Y. Mogilner MD; Pourfar Michael; Wissam Deeb; Kyle Rizer; Justin Rossi; Richard Dowd MD, MS; Michael S. Okun MD

    Study Design:

    Subject Category:
    Movement Disorders

    Meeting: 2016 ASSFN Biennial Meeting Late Breaking

    Introduction: Emerging evidence from clinical studies suggests that DBS is effective in treating the symptoms of refractory Tourette Syndrome (TS). The data, gleaned from multiple case reports and small case series, has been notable for significant variation in target selection, outcome measures, and length of follow-up. The International TS DBS Registry and Database is a central data repository for the worldwide experience.

    Methods: The International TS Registry and Database currently consists of 31 participating institutions in Australia, Europe, China, Japan, Canada and the USA. To date, 16/31 sites have submitted data, reflecting 160 individual patients. Our own single-center experience in 13 patients, included in the registry, was compared to the entire worldwide experience.

    Results: The brain target structures utilized include 94 medial thalamus, 41 posteroventral GPi, 23 anteromedial GPi, and 2 nucleus accumbens region. The mean age of disease onset is 7.8 years, and average at surgery was 29.6 years. 18% reported a history of self-injurious behavior. Mean Yale Global Tic Severity Scale was 74.1 at baseline, and 37.8 at 24-month follow-up. There were 80/160 records (50%) that contained information on specific adverse events. Device-related adverse events were noted in 15% of cases, the most common being device infection/erosion. The device explant rate was 17%, with the reasons for explant including device-related complications, lack of clinical response, as well as spontaneous improvement in tics. In our single-center experience of 13 patients with a median f/u of 23 months, mean patient age at surgery was noted to be 10 years younger (19.9 YO), with a slightly higher baseline YGTSS (85), but with a similar reduction at latest follow-up (51% reduction, 85->42).

    Conclusions: Given the small number of DBS surgeries performed for TS, and variation in the field, more information will be necessary to plan next steps in this area. Though there are gaps in the data, encouraging collaboration and more standardization of data sets will drive the field and likely improve outcomes. Any individual or institution can join the collaborative effort.

    Patient Care: Increase knowledge of DBS for TS.

    Learning Objectives: To inform the community as to the presence of the TSA database which should help further our knowledge


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