Dysphagia Assessments as Criteria in the 'Decision-Making Process' for Percutaneous Endoscopic Gastrostomy Placement in People with Amyotrophic Lateral Sclerosis: A Systematic Review.

To review the assessment methods of dysphagia as a criterion for the decision-making process for Percutaneous Endoscopic Gastrostomy (PEG) placement in patients with Amyotrophic Lateral Sclerosis (ALS). Systematic review. A search was conducted in three databases (EMBASE, CINAHL, PUBMED) in December 2022 and updated in July 2023. Two reviewers independently screened, selected, and extracted data. Study quality was appraised using the Joanna Briggs Institute Critical Appraisal Tools. Systematic review registration number in the International Prospective Register of Systematic Reviews (PROSPERO): CRD42022385461. The searches identified 240 records. The 10 eligible studies included 2 case reports, 4 retrospective studies, 3 prospective studies, and 1 cohort observational study. Study quality was low, with most studies having moderate to high risk of bias. Dysphagia is a common criterion for decision-making. Dysphagia assessment is usually in the form of either self-reports, objective instrumental assessments, or both. Dysphagia is a common criterion for the decision-making process, yet is missing in clinical guidelines. Establishing the optimal means of dysphagia assessment is important for timely decision-making procedures, so that life-threatening consequences of dysphagia are minimized.

Apolipoprotein E Gene in α-Synucleinopathies: A Narrative Review.

In this narrative review, we delved into the intricate interplay between Apolipoprotein E (APOE) alleles (typically associated with Alzheimer's disease-AD) and alpha-synucleinopathies (aS-pathies), involving Parkinson's disease (PD), Parkinson's disease dementia (PDD), dementia with Lewy bodies (DLB), and multiple-system atrophy (MSA). First, in-vitro, animal, and human-based data on the exacerbating effect of APOE4 on LB pathology were summarized. We found robust evidence that APOE4 carriage constitutes a risk factor for PDD-APOE2, and APOE3 may not alter the risk of developing PDD. We confirmed that APOE4 copies confer an increased hazard towards DLB, as well. Again APOE2 and APOE3 appear unrelated to the risk of conversion. Of note, in individuals with DLB APOE4, carriage appears to be intermediately prevalent between AD and PDD-PD (AD > DLB > PDD > PD). Less consistency existed when it came to PD; APOE-PD associations tended to be markedly modified by ethnicity. Finally, we failed to establish an association between the APOE gene and MSA. Phenotypic associations (age of disease onset, survival, cognitive-neuropsychiatric- motor-, and sleep-related manifestations) between APOE alleles, and each of the aforementioned conditions were also outlined. Finally, a synopsis of literature gaps was provided followed by suggestions for future research.

Rituximab as a sole steroid-sparing agent in generalized myasthenia gravis: Long-term outcomes.

BACKGROUND: Rituximab, a B-cell depleting monoclonal antibody, represents an option for the treatment of refractory myasthenia gravis (MG). Its use is more established in muscle-specific tyrosine kinase positive (MuSK +) patients, while its role in managing acetylcholine receptor positive (AChR +), or double seronegative (DSN) patients, remains less clear. This study evaluates the long-term effectiveness and safety of rituximab in MG of various serotypes. METHODS: We conducted an open-label study of MG patients receiving rituximab. Adults with generalized refractory MG, either anti-AChR + or DSN, and anti-MuSK + , refractory or not, who had follow-up > 12 months were selected. Change in quantitative myasthenia gravis (QMG) score at last follow-up, compared with baseline was a primary outcome, as well as factors affecting response to treatment. Secondary outcomes included, long-term safety, the steroid-sparing effect and relapse rates post-rituximab. RESULTS: Thirty patients (16 anti-AChR + , 6 anti-MuSK + , 8 DSN) followed for a mean of 33.3 months were included. Mean scores pre-rituximab compared to last follow-up significantly decreased (p < 0.001), from 11 ± 4.1 to 4.3 ± 3.8, and from 1.9 to 0.3 regarding QMG and relapse rate per patient/year, respectively, while in 93.1% a daily steroid dose ≤ 10 mg was achieved. Antibody status was the only factor independently influencing several endpoints. Throughout the study period no crises or deaths occurred. CONCLUSION: The present study supports that rituximab is an effective and well tolerated treatment for refractory anti-AChR + and DSN MG patients, while anti-MuSK + remains the group experiencing the greater benefits.

Detecting Minor Symptoms of Parkinson's Disease in the Wild Using Bi-LSTM with Attention Mechanism.

Parkinson's disease (PD) is a neurodegenerative disorder characterized by motor and nonmotor impairment with various implications on patients' quality of life. Since currently available therapies are only symptomatic, identifying individuals with prodromal, preclinical, or early-stage PD is crucial, as they would be ideal candidates for future disease-modifying therapies. Our analysis aims to develop a robust model for accurate PD detection using accelerometer data collected from PD and non-PD individuals with mild or no tremor during phone conversations. An open-access dataset comprising accelerometer recordings from 22 PD patients and 11 healthy controls (HCs) was utilized. The data were preprocessed to extract relevant time-, frequency-, and energy-related features, and a bidirectional long short-term memory (Bi-LSTM) model with attention mechanism was employed for classification. The performance of the model was evaluated using fivefold cross-validation, and metrics of accuracy, precision, recall, specificity, and f1-score were computed. The proposed model demonstrated high accuracy (98%), precision (99%), recall (98%), specificity (96%), and f1-score (98%) in accurately distinguishing PD patients from HCs. Our findings indicate that the proposed model outperforms existing approaches and holds promise for detection of PD with subtle symptoms, like tremor, in the wild. Such symptoms can present in the early or even prodromal stage of the disease, and appropriate mobile-based applications may be a practical tool in real-life settings to alert individuals at risk to seek medical assistance or give patients feedback in monitoring their symptoms.

Multi-Modal Deep Learning Diagnosis of Parkinson's Disease-A Systematic Review.

Parkinson's Disease (PD) is among the most frequent neurological disorders. Approaches that employ artificial intelligence and notably deep learning, have been extensively embraced with promising outcomes. This study dispenses an exhaustive review between 2016 and January 2023 on deep learning techniques used in the prognosis and evolution of symptoms and characteristics of the disease based on gait, upper limb movement, speech and facial expression-related information as well as the fusion of more than one of the aforementioned modalities. The search resulted in the selection of 87 original research publications, of which we have summarized the relevant information regarding the utilized learning and development process, demographic information, primary outcomes, and sensory equipment related information. Various deep learning algorithms and frameworks have attained state-of-the-art performance in many PD-related tasks by outperforming conventional machine learning approaches, according to the research reviewed. In the meanwhile, we identify significant drawbacks in the existing research, including a lack of data availability and interpretability of models. The fast advancements in deep learning and the rise in accessible data provide the opportunity to address these difficulties in the near future and for the broad application of this technology in clinical settings.

Evaluating Gait Impairment in Parkinson's Disease from Instrumented Insole and IMU Sensor Data.

Parkinson's disease (PD) is characterized by a variety of motor and non-motor symptoms, some of them pertaining to gait and balance. The use of sensors for the monitoring of patients' mobility and the extraction of gait parameters, has emerged as an objective method for assessing the efficacy of their treatment and the progression of the disease. To that end, two popular solutions are pressure insoles and body-worn IMU-based devices, which have been used for precise, continuous, remote, and passive gait assessment. In this work, insole and IMU-based solutions were evaluated for assessing gait impairment, and were subsequently compared, producing evidence to support the use of instrumentation in everyday clinical practice. The evaluation was conducted using two datasets, generated during a clinical study, in which patients with PD wore, simultaneously, a pair of instrumented insoles and a set of wearable IMU-based devices. The data from the study were used to extract and compare gait features, independently, from the two aforementioned systems. Subsequently, subsets comprised of the extracted features, were used by machine learning algorithms for gait impairment assessment. The results indicated that insole gait kinematic features were highly correlated with those extracted from IMU-based devices. Moreover, both had the capacity to train accurate machine learning models for the detection of PD gait impairment.

Identical late motor responses in early Guillain-Barré syndrome: A-waves and repeater F-waves.

Electrodiagnostic (EDx) studies play a key role in the investigation of suspected Guillain-Barré syndrome (GBS), providing diagnostic and prognostic information. However, initial EDx findings may not fulfill the neurophysiological criteria for the disease. The aim of this study was to estimate the occurrence and characteristics of A-waves and repeaters F-waves (Freps), both late motor responses identical in latency and configuration, in early stages of GBS. We retrospectively analyzed the initial nerve conduction study (NCS) of 26 GBS patients performed within 10 days from symptom onset. The final subtype diagnosis was acute inflammatory demyelinating polyneuropathy (AIDP) in 16 patients (six met the criteria at the initial EDx study and 10 at follow-up) and acute motor axonal neuropathy (AMAN) in 10 patients (six initially). Identical late responses were commonly found in the majority of nerves (84%). A-waves were present in 59% and an increased frequency of Freps was calculated in 61% of the 105 studied nerves. A-waves morphology (single or complex) could not distinguish between AIDP and AMAN. Nerves with normal NCS had a significantly higher frequency of A-waves, either isolated or in combination with increased index total Freps, as compared to nerves with low compound muscle action potential (CMAP) amplitudes or conduction block. Our findings suggest that both late responses can be useful as early markers of conduction changes of various pathophysiology, being frequently present even prior to abnormalities of CMAP parameters.

Can Gait Features Help in Differentiating Parkinson's Disease Medication States and Severity Levels? A Machine Learning Approach.

Parkinson's disease (PD) is one of the most prevalent neurological diseases, described by complex clinical phenotypes. The manifestations of PD include both motor and non-motor symptoms. We constituted an experimental protocol for the assessment of PD motor signs of lower extremities. Using a pair of sensor insoles, data were recorded from PD patients, Elderly and Adult groups. Assessment of PD patients has been performed by neurologists specialized in movement disorders using the Movement Disorder Society-Unified Parkinson's Disease Rating Scale (MDS-UPDRS)-Part III: Motor Examination, on both ON and OFF medication states. Using as a reference point the quantified metrics of MDS-UPDRS-Part III, severity levels were explored by classifying normal, mild, moderate, and severe levels of PD. Elaborating the recorded gait data, 18 temporal and spatial characteristics have been extracted. Subsequently, feature selection techniques were applied to reveal the dominant features to be used for four classification tasks. Specifically, for identifying relations between the spatial and temporal gait features on: PD and non-PD groups; PD, Elderly and Adults groups; PD and ON/OFF medication states; MDS-UPDRS: Part III and PD severity levels. AdaBoost, Extra Trees, and Random Forest classifiers, were trained and tested. Results showed a recognition accuracy of 88%, 73% and 81% for, the PD and non-PD groups, PD-related medication states, and PD severity levels relevant to MDS-UPDRS: Part III ratings, respectively.

Man-in-a-barrel syndrome: a rare presentation of giant cell arteritis.

We present herein the case of a patient with brachial plexopathy, the first manifestation of giant cell arteritis (GCA). A 71-year-old woman presented with a subacute-onset weakness of her upper extremities; the patient had an initially good clinical response to steroid treatment. However, a few weeks after steroid discontinuation, she manifested fever and fatigue and increased serum markers consistent with a systemic inflammatory response. A PET-CT scan revealed an increased uptake in the subclavian arteries and a temporal biopsy was typical for GCA. Oral administration of high dosage steroids improved the patient's clinical symptoms and normalised her inflammatory serum markers.

Autoantibody profile in myasthenia gravis patients with a refractory phase.

INTRODUCTION/AIMS: A subgroup of myasthenia gravis (MG) patients fail to respond adequately to recommended treatments, a condition referred to as refractory MG. During the refractory phase, patients experience persistent debilitating symptoms with potential life-threatening events or inability to reduce immunosuppressant dosages and minimize long-term toxicities. METHODS: We conducted a retrospective, single-center study of 113 MG patients to investigate the autoantibody profile and clinical characteristics of refractory MG patients, compared with nonrefractory patients, based on predefined criteria. RESULTS: Fifteen patients (13.3%) were classified as refractory. Double-seronegative MG (DSNMG), without detectable nicotinic acetylcholine receptor (AChR) or muscle-specific tyrosine kinase (MuSK) antibodies, was identified in six refractory patients, significantly higher than those with nonrefractory MG (40% vs 16.3%; P = .031). None of the refractory patients had MuSK antibodies. Patients in the refractory group more frequently had an earlier disease onset, thymic pathology, and thymectomy (P ≤. 03 for all). DISCUSSION: In this study, patients with refractory MG were more likely than those with nonrefractory MG to be DSN; and refractory DSNMG patients had worse MGFA classes in their recent visit compared with anti-AChR positive refractory patients. Refractory DSNMG patients may represent a distinct group that requires more individualized and targeted treatment approaches.

The Smart-Insole Dataset: Gait Analysis Using Wearable Sensors with a Focus on Elderly and Parkinson's Patients.

Gait analysis is crucial for the detection and management of various neurological and musculoskeletal disorders. The identification of gait events is valuable for enhancing gait analysis, developing accurate monitoring systems, and evaluating treatments for pathological gait. The aim of this work is to introduce the Smart-Insole Dataset to be used for the development and evaluation of computational methods focusing on gait analysis. Towards this objective, temporal and spatial characteristics of gait have been estimated as the first insight of pathology. The Smart-Insole dataset includes data derived from pressure sensor insoles, while 29 participants (healthy adults, elderly, Parkinson's disease patients) performed two different sets of tests: The Walk Straight and Turn test, and a modified version of the Timed Up and Go test. A neurologist specialized in movement disorders evaluated the performance of the participants by rating four items of the MDS-Unified Parkinson's Disease Rating Scale. The annotation of the dataset was performed by a team of experienced computer scientists, manually and using a gait event detection algorithm. The results evidence the discrimination between the different groups, and the verification of established assumptions regarding gait characteristics of the elderly and patients suffering from Parkinson's disease.

Inhibitory Control on a Stop Signal Task in Tourette Syndrome before and after Deep Brain Stimulation of the Internal Segment of the Globus Pallidus.

As part of the first randomized double-blind trial of deep brain stimulation (DBS) of the globus pallidus (GPi) in Tourette syndrome, we examined the effect of stimulation on response initiation and inhibition. A total of 14 patients with severe Tourette syndrome were recruited and tested on the stop signal task prior to and after GPi-DBS surgery and compared to eight age-matched healthy controls. Tics were significantly improved following GPi-DBS. The main measure of reactive inhibition, the stop signal reaction time did not change from before to after surgery and did not differ from that of healthy controls either before or after GPi-DBS surgery. This suggests that patients with Tourette syndrome have normal reactive inhibition which is not significantly altered by GPi-DBS.

Effects of COVID-19 on the admissions of aneurysmal subarachnoid hemorrhage: the West Greece experience.

BACKGROUND: Acute subarachnoid hemorrhage (SAH) due to aneurysmal rupture is a devastating vascular disease accounting for 5% of strokes. COVID-19 pandemic resulted in a decrease in elective and emergency admissions in the majority of neurosurgical centers. The main hypothesis was that fear of COVID-19 may have prevented patients with critical medical or surgical emergencies from actively presenting in emergency departments and outpatient clinics. METHODS: We conducted a single-center, retrospective, observational study searching our institutional data regarding the incidence of spontaneous subarachnoid hemorrhage (SAH) and compare the admissions in two different periods: the pre COVID-19 with the COVID-19 period. RESULTS: The study cohort was comprised of a total of 99 patients. The mean (SD) weekly case rate of patients with SAH was 1.1 (1.1) during the pre-COVID-19 period, compared to 1.7 (1.4) during the COVID-19 period. Analysis revealed that the volume of admitted patients with SAH was 1.5-fold higher during the COVID period compared to the pre-COVID period and this was statistically significant (ExpB = 1.5, CI 95% 1-2.3, p = 0.044). Difference in mortality did not reach any statistical significance between the two periods (p = 0.097), as well as patients' length of stay (p = 0.193). CONCLUSIONS: The presented data cover a more extended time period than so far published reports; it is reasonable that our recent experience may well be demonstrating a general realistic trend of overall increase in aneurysmal rupture rates during lockdown. Hospitalization of patients with SAH cannot afford any reductions in facilities, equipment, or personnel if optimum outcomes are desirable.

An ischemic stroke as the presenting manifestation of rapidly progressive primary angiitis of central nervous system in a 17-year-old boy.

BACKGROUND: Childhood primary angiitis of the central nervous system (cPACNS) is an increasingly recognized inflammatory brain disease in children. CASE PRESENTATION: We present a case of a 17-year-old boy with recurrent ischemic events over a short time period. Diagnosis of angiography positive cPACNS was made based on neuroimaging findings while secondary causes or mimics of CNS vasculitis were meticulously excluded. The patient exhibited rapid deterioration of his condition with poor initial response to immunosuppressive treatment. CONCLUSIONS: Recognition of cPACNS remains a challenge because of rarity of disease, unexplained etiopathogenesis, protean clinical presentation, as well as lack of specific laboratory and neuroimaging markers.

Globus pallidal deep brain stimulation for Tourette syndrome: Effects on cognitive function.

INTRODUCTION: In a double-blind randomized crossover trial, we previously established that bilateral deep brain stimulation of the anteromedial globus pallidus internus (GPiam-DBS) is effective in significantly reducing tic severity in patients with refractory Tourette syndrome (TS). Here, we report the effects of bilateral GPiam-DBS on cognitive function in 11 of the 13 patients who had participated in our double-blind cross-over trial of GPi-DBS. METHODS: Patients were assessed at baseline (4 weeks prior to surgery) and at the end of each of the three-month blinded periods, with stimulation either ON or OFF. The patients were evaluated on tests of memory (California Verbal Learning Test-II (CVLT-II); Corsi blocks; Short Recognition Memory for Faces), executive function (D-KEFS Stroop color-word interference, verbal fluency, Trail-making test, Hayling Sentence Completion test), and attention (Paced Auditory Serial Addition Test, Numbers and Letters Test). RESULTS: GPiam-DBS did not produce any significant change in global cognition. Relative to pre-operative baseline assessment verbal episodic memory on the CVLT-II and set-shifting on the Trail-making Test were improved with DBS OFF. Performance on the cognitive tests were not different with DBS ON versus DBS OFF. GPiam-DBS did not alter aspects of cognition that are impaired in TS such as inhibition on the Stroop interference task or the Hayling Sentence Completion test. CONCLUSIONS: This study extends previous findings providing data showing that GPiam-DBS does not adversely affect cognitive domains such as memory, executive function, verbal fluency, attention, psychomotor speed, and information processing. These results indicate that GPiam-DBS does not produce any cognitive deficits in TS.

Image-based analysis and long-term clinical outcomes of deep brain stimulation for Tourette syndrome: a multisite study.

BACKGROUND: Deep brain stimulation (DBS) can be an effective therapy for tics and comorbidities in select cases of severe, treatment-refractory Tourette syndrome (TS). Clinical responses remain variable across patients, which may be attributed to differences in the location of the neuroanatomical regions being stimulated. We evaluated active contact locations and regions of stimulation across a large cohort of patients with TS in an effort to guide future targeting. METHODS: We collected retrospective clinical data and imaging from 13 international sites on 123 patients. We assessed the effects of DBS over time in 110 patients who were implanted in the centromedial (CM) thalamus (n=51), globus pallidus internus (GPi) (n=47), nucleus accumbens/anterior limb of the internal capsule (n=4) or a combination of targets (n=8). Contact locations (n=70 patients) and volumes of tissue activated (n=63 patients) were coregistered to create probabilistic stimulation atlases. RESULTS: Tics and obsessive-compulsive behaviour (OCB) significantly improved over time (p<0.01), and there were no significant differences across brain targets (p>0.05). The median time was 13 months to reach a 40% improvement in tics, and there were no significant differences across targets (p=0.84), presence of OCB (p=0.09) or age at implantation (p=0.08). Active contacts were generally clustered near the target nuclei, with some variability that may reflect differences in targeting protocols, lead models and contact configurations. There were regions within and surrounding GPi and CM thalamus that improved tics for some patients but were ineffective for others. Regions within, superior or medial to GPi were associated with a greater improvement in OCB than regions inferior to GPi. CONCLUSION: The results collectively indicate that DBS may improve tics and OCB, the effects may develop over several months, and stimulation locations relative to structural anatomy alone may not predict response. This study was the first to visualise and evaluate the regions of stimulation across a large cohort of patients with TS to generate new hypotheses about potential targets for improving tics and comorbidities.

Efficacy and Safety of Deep Brain Stimulation in Tourette Syndrome: The International Tourette Syndrome Deep Brain Stimulation Public Database and Registry.

Importance: Collective evidence has strongly suggested that deep brain stimulation (DBS) is a promising therapy for Tourette syndrome. Objective: To assess the efficacy and safety of DBS in a multinational cohort of patients with Tourette syndrome. Design, Setting, and Participants: The prospective International Deep Brain Stimulation Database and Registry included 185 patients with medically refractory Tourette syndrome who underwent DBS implantation from January 1, 2012, to December 31, 2016, at 31 institutions in 10 countries worldwide. Exposures: Patients with medically refractory symptoms received DBS implantation in the centromedian thalamic region (93 of 163 [57.1%]), the anterior globus pallidus internus (41 of 163 [25.2%]), the posterior globus pallidus internus (25 of 163 [15.3%]), and the anterior limb of the internal capsule (4 of 163 [2.5%]). Main Outcomes and Measures: Scores on the Yale Global Tic Severity Scale and adverse events. Results: The International Deep Brain Stimulation Database and Registry enrolled 185 patients (of 171 with available data, 37 females and 134 males; mean [SD] age at surgery, 29.1 [10.8] years [range, 13-58 years]). Symptoms of obsessive-compulsive disorder were present in 97 of 151 patients (64.2%) and 32 of 148 (21.6%) had a history of self-injurious behavior. The mean (SD) total Yale Global Tic Severity Scale score improved from 75.01 (18.36) at baseline to 41.19 (20.00) at 1 year after DBS implantation (P < .001). The mean (SD) motor tic subscore improved from 21.00 (3.72) at baseline to 12.91 (5.78) after 1 year (P < .001), and the mean (SD) phonic tic subscore improved from 16.82 (6.56) at baseline to 9.63 (6.99) at 1 year (P < .001). The overall adverse event rate was 35.4% (56 of 158 patients), with intracranial hemorrhage occurring in 2 patients (1.3%), infection in 4 patients with 5 events (3.2%), and lead explantation in 1 patient (0.6%). The most common stimulation-induced adverse effects were dysarthria (10 [6.3%]) and paresthesia (13 [8.2%]). Conclusions and Relevance: Deep brain stimulation was associated with symptomatic improvement in patients with Tourette syndrome but also with important adverse events. A publicly available website on outcomes of DBS in patients with Tourette syndrome has been provided.

Refining the Deep Brain Stimulation Target within the Limbic Globus Pallidus Internus for Tourette Syndrome.

BACKGROUND: Deep brain stimulation (DBS) in patients with severe, refractory Tourette syndrome (TS) has demonstrated promising but variable results thus far. The thalamus and anteromedial globus pallidus internus (amGPi) have been the most commonly stimulated sites within the cortico-striato thalamic circuit, but an optimal target is yet to be elucidated. OBJECTIVES: This study of 15 patients with long-term amGPi DBS for severe TS investigated whether a specific anatomical site within the amGPi correlated with optimal clinical outcome for the measures of tics, obsessive compulsive behaviour (OCB), and mood. METHODS: Validated clinical assessments were used to measure tics, OCB, quality of life, anxiety, and depression before DBS and at the latest follow-up (17-82 months). Electric field simulations were created for each patient using information on electrode location and individual stimulation parameters. A subsequent regression analysis correlated these patient-specific simulations to percentage changes in outcome measures in order to identify any significant voxels related to clinical improvement. RESULTS: A region within the ventral limbic GPi, specifically on the medial medullary lamina in the pallidum at the level of the AC-PC, was significantly associated with improved tics but not mood or OCB outcome. CONCLUSIONS: This study adds further support to the application of DBS in a tic-related network, though factors such as patient sample size and clinical heterogeneity remain as limitations and replication is required.

The International Deep Brain Stimulation Registry and Database for Gilles de la Tourette Syndrome: How Does It Work?

Tourette Syndrome (TS) is a neuropsychiatric disease characterized by a combination of motor and vocal tics. Deep brain stimulation (DBS), already widely utilized for Parkinson's disease and other movement disorders, is an emerging therapy for select and severe cases of TS that are resistant to medication and behavioral therapy. Over the last two decades, DBS has been used experimentally to manage severe TS cases. The results of case reports and small case series have been variable but in general positive. The reported interventions have, however, been variable, and there remain non-standardized selection criteria, various brain targets, differences in hardware, as well as variability in the programming parameters utilized. DBS centers perform only a handful of TS DBS cases each year, making large-scale outcomes difficult to study and to interpret. These limitations, coupled with the variable effect of surgery, and the overall small numbers of TS patients with DBS worldwide, have delayed regulatory agency approval (e.g., FDA and equivalent agencies around the world). The Tourette Association of America, in response to the worldwide need for a more organized and collaborative effort, launched an international TS DBS registry and database. The main goal of the project has been to share data, uncover best practices, improve outcomes, and to provide critical information to regulatory agencies. The international registry and database has improved the communication and collaboration among TS DBS centers worldwide. In this paper we will review some of the key operation details for the international TS DBS database and registry.