Original articlePEDiDBS: The pediatric international deep brain stimulation registry project

- Worldwide data-sharing registry for pediatric patients undergoing DBS.
- Culmination of 6 years of work, the registry opened for enrollment May 2016.
- Patient privacy concerns and multinational regulations are vital considerations.
- Information available and participation requests at www.pedidbs.org.

BackgroundInteractive neuromodulation represents the evolving frontier in surgical treatment of a variety of disorders involving the sensory organs and nervous system. Building on the advances of pioneering neurologists and neurosurgeons, progress has been made since the introduction of deep brain stimulation (DBS). Microelectrode recording has greatly aided our understanding of the underlying pathogenesis of movement disorders and the effects of electrical stimulation. The introduction of image - guided systems to provide targeted, controlled neuro-stimulation to specific brain areas is an emerging technique for implantation and may have special appeal for pediatric patients.Rationale/AimDBS is generally accepted as a treatment for some forms of childhood dystonia. Its potential role in other pediatric movement disorders is less well established. This is important, as most forms of dystonia begin in childhood or adolescence and many are inadequately responsive to current pharmacotherapy and other interventions. Nonetheless, many aspects of deep brain stimulation need clarification.ConclusionThis can only be accomplished through an organized platform for data sharing that will allow questions to be asked and hopefully answered, with the ultimate goal of developing evidence based practice based guidelines elucidating the role of DBS in pediatric patients.