Tic Disorder

Researchers are developing a multicenter registry to collect and share data on pediatric patients who have undergone deep brain stimulation (DBS) for movement disorders such as dystonia, epilepsy, Tourette syndrome, and mood disorders. The study aims to improve understanding of DBS safety and effectiveness in children, as current data are limited and individual centers often have too few cases for strong research. This registry will support large-scale analyses and help refine DBS as a treatment option for hyperkinetic movement disorders in the pediatric population. The study involves gathering both retrospective and prospective clinical data from multiple pediatric centers. The registry will collect information on surgical techniques, patient outcomes, implant sites, and long-term effects of DBS. This collaborative data-sharing approach enables comprehensive evaluation of which patients benefit most from DBS and how it impacts their quality of life over time. Participants include children aged 0 to 18 years who have already received or are scheduled to receive DBS for neurological movement disorders. Data will be collected over five years to monitor safety, efficacy, and quality of life outcomes. The study does not involve treatment administration but focuses on gathering and analyzing clinical information. Parental or legal guardian consent is required for prospective participation.

Researchers are monitoring people with advanced idiopathic Parkinson's Disease who have moderate to severe motor symptoms that do not respond well to medication. This study is an international, observational registry following patients who have undergone a unilateral pallidotomy using the Exablate Neuro device. The goal is to collect long-term information about this treatment after its approval. The treatment involves a focused ultrasound procedure called unilateral pallidotomy performed with the Exablate Model 4000 system. This registry will observe patients who have already received this procedure as part of their standard care. No additional treatment is given as part of the study. Patients will be followed with visits at 3, 6, and 12 months after the procedure, and then annually for up to 5 years. During the follow-up visits, researchers will collect information including any side effects, medication use, motor function scores, dyskinesia severity, quality of life, work productivity, and overall impressions from both doctors and patients. Safety and effectiveness will be assessed mainly by tracking responder outcomes over five years. Participants will be closely monitored throughout the study period, which may last up to five years from the time of the procedure.

Researchers are investigating epilepsy-dyskinesia syndromes, which are rare genetic diseases causing both movement disorders and epilepsy in children. This multinational retrospective survey, supported by the International Parkinson and Movement Disorder Society, aims to collect detailed clinical and molecular data to better understand these conditions. The study focuses on identifying patterns in disease features, progression, and genetic links to improve knowledge and support precision medicine. The study collects previously recorded data from multiple countries, harmonizing information on clinical features, disease progression, age of onset, genetic variants, and coexisting neurological conditions. By standardizing this data, the survey addresses challenges in rare disease research like small, dispersed patient groups and inconsistent protocols. The goal is to build a shared clinical database and analyze how movement and seizure disorders relate at both clinical and molecular levels. Participants are children aged 0 to 18 years with diagnosed movement disorders linked to specific genetic variants. The study reviews existing medical records and genetic information without new treatments or interventions. Researchers will assess the disease spectrum, how movement disorders affect quality of life, and the effectiveness of symptomatic treatments over one year. The study encourages international collaboration to advance understanding and improve care for these rare conditions.

Researchers are evaluating the long-term safety and effectiveness of Abbott deep brain stimulation (DBS) systems used for various movement disorders, including Parkinson's disease, essential tremor, disabling tremor, and dystonia. This international, prospective, multicenter study collects data from patients implanted with Abbott DBS devices during routine clinical care to understand outcomes over time. Participants implanted with the Abbott DBS system will be observed without altering their treatment, as this is an observational study. The study follows subjects for five years from their initial programming visit to gather information on device performance and patient motor function over time. During the study, participants will have regular assessments using disease-specific motor rating scales such as MDS-UPDRS Part III for Parkinson's disease and FTM-TRS for tremor. Researchers will monitor changes in motor symptoms and record any serious device- or procedure-related adverse events. Study involvement lasts for five years, allowing long-term collection of safety and effectiveness data.

This research aims to develop a registry for adults with tic disorders to better understand how tic severity relates to the impact on daily life, particularly comparing women and men with these conditions. The study is observational, focusing on collecting detailed information rather than testing specific treatments. Participants will complete various quality of life and symptom questionnaires, including scales like PUTS, OCI, TS-QOL, ASRS, GAD-7, PHQ9, and TAPS. These assessments help to capture the severity of tics and their effects. The main focus is on gathering data to analyze the relationship between tic severity and quality of life over a six-month period. During the study, participants will be asked to fill out these questionnaires, which provide insight into their symptoms and well-being. Researchers will measure the correlation between quality of life and tic severity at six months, as well as any changes in tics during this time. The study involves ongoing observation without treatment intervention, and participants' involvement will last at least six months to allow for these assessments.

Researchers are investigating how individuals with limb weakness, limb paralysis, limb loss, or movement disorders move in various settings using different assistive devices and technologies. The study aims to understand how these devices impact human movement to improve technology and prepare for commercialization. Participants include both nondisabled individuals and those with disabilities who use assistive devices such as prostheses and orthoses. The study compares participants using their usual assistive devices or no device with those using investigational or commercially available devices, including prosthetic knees, ankles, feet, and ankle-foot orthoses. Activities are categorized into movement analysis in the laboratory and outside it, usability testing, and focus groups. Participants may complete different combinations of these activities, possibly more than once. During the study, participants will undergo various movement tests including walking speed, sit-to-stand timing, and the Timed Up and Go test, both with and without assistive devices. Assessments are collected at baseline and immediately after acclimating to the intervention. Participants’ perceptions are recorded, and safety during treadmill use is ensured. The study’s involvement varies per individual and includes multiple assessments to evaluate assistive technology impact on mobility.

Inherited movement disorders are rare and progressive conditions that can significantly affect autonomy over time. These disorders include spinocerebellar ataxias and various hyperkinetic disorders such as dystonias, choreas, tremor, parkinsonism, and myoclonus. The study focuses on understanding the clinical spectrum, genetic factors, natural history, and molecular basis of these diseases, aiming to develop biomarkers and support clinical and genetic management. The project also seeks to prepare patient groups ready for clinical trials and evaluate new symptomatic or mechanism-based therapies. Participants will undergo clinical follow-up involving demographic and medical history collection, neurological and clinical examinations, and use of rating scales specific to their condition. Optional procedures include cerebral MRI scans and biological sample collection. This observational study involves patients with inherited hyperkinetic movement disorders, at-risk individuals related to patients, and healthy controls, with some participants optionally undergoing skin biopsies or MRI examinations. Throughout the study, researchers will evaluate clinical, genetic, biological, and imaging biomarkers over a 10-year period to characterize disease progression and phenotype-genotype correlations. Participants will be monitored through interviews, neurological exams, rating scales, and optional imaging and biological assessments. The study aims to collect comprehensive data to support future therapeutic trials and improve diagnosis and patient care for these rare movement disorders.

Researchers are studying the use of botulinum toxin (BTX) to treat various movement disorders characterized by involuntary muscle spasms. The study focuses on following the natural history of patients receiving standard BTX injections and providing treatment within other NIH research protocols. The goal is to better understand how BTX works across different neurological conditions like dystonia, tremor, and spasticity. Participants 2 years and older with movement disorders that might respond to BTX, such as hemifacial spasm, blepharospasm, tics, or tardive dyskinesia, may be included. Treatment involves BTX injections tailored to each patient's specific disorder and symptoms. The study also trains physicians in specialized injection techniques using tools like EMG and ultrasound guidance. During the study, patients receive regular BTX injections and are monitored over time to maintain a stable response. Researchers collect ongoing data to analyze the natural course of these movement disorders and the effects of BTX treatment. This observational approach helps gather valuable information while patients continue their care with trained providers.

Researchers are evaluating a combined treatment for young people aged 12 to 21 with chronic tics, including Tourette Syndrome. Chronic tics are disabling symptoms linked to various child-onset mental disorders and can greatly affect quality of life, emotional and behavioral health, and increase suicide risk. The study focuses on improving tic suppression ability, which is key for success in Comprehensive Behavioral Intervention for Tics (CBIT), but many youth lack this ability. This trial assesses the clinical and brain effects of combining CBIT with transcranial magnetic stimulation (TMS) targeting the supplementary motor area (SMA).

Researchers are investigating a new personalized treatment approach using non-invasive brain stimulation combined with behavioral therapy for children and adolescents aged 5 to 18 years who have Tic Disorders. The study aims to understand how this treatment affects brain circuits, improve the effectiveness of transcranial magnetic stimulation (TMS), and develop precise brain modulation methods tailored for pediatric patients with Tic Disorders. Participants will be randomly assigned to one of two groups. In the intervention group, children will receive TMS using a ZL-N-010 device targeted at specific brain areas including the prefrontal, bilateral temporal, and parietal lobes, with each session lasting about 30 minutes over 10 sessions. They will also receive general behavioral therapy aimed at managing symptoms. The control group will receive sham (placebo) stimulation along with the same behavioral therapy. Throughout the 10-week study period, participants will have their tic severity and brain activity assessed before and after treatment. Brain scans will measure changes in activation and connectivity in targeted regions. Researchers will monitor the treatment effects and safety, with the total study duration including these assessments. The study is sponsored by Shanghai Children's Medical Center and begins in June 2025.