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Deep brain stimulation in Tourette syndrome: the known and the unknown
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  • Published on:
    Reducing Uncertainty and Expanding Patient Engagement in Deep Brain Stimulation Trials for Tourette Syndrome
    • Kara A Johnson, Graduate Research Fellow, Department of Biomedical Engineering, Scientific Computing & Imaging (SCI) Institute University of Utah
    • Other Contributors:
      • Marwan Hariz, Neurosurgeon
      • Thomas Foltynie, Neurologist
      • Ludvic Zrinzo, Neurosurgeon
      • Aysegul Gunduz, Associate Professor
      • Kelly D Foote, Neurosurgeon
      • Michael S Okun, Neurologist
      • Joseph J Fins, Professor
      • Christopher R Butson, Associate Professor

    We appreciate the editorial by Dr. Muller-Vahl [1] about our recent article [2]. The large, international study group who co-authored our paper collectively felt that it would be useful to provide clarification of a few important points regarding the International Tourette Syndrome (TS) Deep Brain Stimulation (DBS) Database and Registry, the International Neuromodulation Registry, and our published analysis.

    There is widespread agreement on the need for more randomized controlled trials (RCTs) to evaluate the efficacy of DBS for many indications, including TS, and there has been substantial discussion in the medical community about how these trials should be organized and carried out [3]. Our approach to overcome the challenges with the modest amount of data available for surgical therapies for TS has been to use symbiotic data sharing [4]. This approach encourages the broadening of investigative teams after publication of clinical studies to perform additional analyses and to develop new hypotheses. The key concept behind this approach is that new investigators work in a close, collaborative relationship with the teams that conducted the initial data collection. In addition, a recent viewpoint from the Food & Drug Administration in the United States reported that “For some devices, opportunities exist for leveraging alternative data sources, such as existing registries or modeling techniques, to allow regulators to have a good idea of the risks and benefits of...

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    Conflict of Interest:
    M.S. Okun serves as a consultant for the National Parkinson Foundation, and has received research grants from NIH, NPF, the Michael J. Fox Foundation, the Parkinson Alliance, Smallwood Foundation, the Bachmann-Strauss Foundation, the Tourette Syndrome Association, and the UF Foundation. M.S. Okun’s DBS research is supported by: R01 NR014852 and R01NS096008. M.S. Okun has previously received honoraria, but in the past >60 months has received no support from industry. M.S. Okun has received royalties for publications with Demos, Manson, Amazon, Smashwords, Books4Patients, and Cambridge (movement disorders books). M.S. Okun is an associate editor for New England Journal of Medicine Journal Watch Neurology. M.S. Okun has participated in CME and educational activities on movement disorders (in the last 36) months sponsored by PeerView, Prime, QuantiaMD, WebMD, Medicus, MedNet, Henry Stewart, and by Vanderbilt University. The institution and not M.S. Okun receives grants from Medtronic, Abbvie, Allergan, and ANS/St. Jude, and the PI has no financial interest in these grants. M.S. Okun has participated as a site PI and/or co-I for several NIH, foundation, and industry sponsored trials over the years but has not received honoraria. C.R. Butson has served as a consultant for NeuroPace, Advanced Bionics, Boston Scientific, IntelectMedical, St. Jude Medical, Functional Neuromodulation and he holds intellectual property related to DBS.