Recognizing KBG syndrome in pediatric practice: a case series highlighting phenotypic variability and diagnostic clues.

Deep brain stimulation (DBS) is an invasive neurosurgical procedure that involves the implantation of electrodes into specific brain regions, and electrical stimulation is delivered and controlled via an implanted battery source. The number of procedures increases each year (), and the FDA has approved five DBS indications since the early 2000s: Parkinson’s disease, essential tremor, epilepsy, dystonia, and obsessive-compulsive disorder (OCD). More recently, there has been a shift toward novel indications with increased research focused on non-FDA approved indications including neuropsychiatric disorders [e.g., major depressive disorder (MDD), post-traumatic stress disorder (PTSD)], non-approved movement disorders (e.g., Tourette syndrome), and cognitive disorders (e.g., mild cognitive impairment and early Alzheimer’s Disease) (). While recruiting and retaining participants in clinical trials is challenging (; ), DBS studies face additional hurdles given the involvement of an implanted device and the often-heterogeneous nature of the indications investigated. This manuscript is a narrative synthesis of discussions from the 2023 Brain Research Through Advancing Innovative Neurotechnologies® (BRAIN) Workshop on Patient Recruitment in DBS Clinical Trials, held as part of the 11th Annual DBS Think Tank meeting. The hybrid workshop included experts in DBS clinical care, research, engineering, neuroethics, and device regulation and was open to public attendance. The goal of the workshop was to identify barriers and potential solutions related to participant recruitment, retention, and translation of DBS technologies into clinical practice. Workshop discussions were recorded and supplemented by detailed notes taken by workshop organizers and participants. Following the workshop, a subset of authors directly involved in planning and moderating the session synthesized the discussion content into major thematic categories, including barriers and facilitators related to recruitment, retention, and translation of DBS technologies to clinical practice. Themes were identified through review of the recordings and notes and refined through discussion among coauthors. This manuscript is not intended to represent a formal qualitative analysis or consensus statement; rather, it provides a narrative summary of areas of broad agreement that emerged during the workshop while acknowledging that individual perspectives may have varied across participants. Draft sections were circulated among contributing authors for review and revision to ensure accuracy, balance, and representation of the workshop discussions.