An interventional study of Deep Brain Stimulation management in Parkinson's Disease, sponsored by National Institute of Neurological Disorders and Stroke (NINDS). Recruiting at 1 site in United States. Open to participants aged 18 Years to 100 Years. Per ClinicalTrials.gov, last updated 2026-10-16.
Sponsored by National Institute of Neurological Disorders and Stroke (NINDS) · Not applicable, Interventional, and Treatment
Background:
- In deep brain stimulation (DBS), a device called a neurostimulator is placed in the chest. It is attached to wires in parts of the brain that affect movement. DBS might help people with movement disorders like Parkinson s disease (PD), dystonia, and essential tremor (ET).
Objective:
- To provide DBS treatment to people with some movement disorders.
Eligibility:
- Adults 18 years and older with PD, ET, or certain forms of dystonia.
Design:
Objective
The purposes of this protocol are:
To provide DBS therapy and follow-up management
To maintain a cohort of patients treated with DBS who can participate in other NIH protocols addressing the efficacy of functional surgery and the relevant physiology.
To collect physiology, programming, and efficacy data related to DBS therapy and motor and cognitive function in these patient populations. All the data collected will be an outcome of standard of care and all analyses will be retrospective.
All treatment under this protocol will be based on the current standard of care for DBS therapy. All tests and study procedures will be administered per standard and routine clinical care; however, the schedule of procedures has been standardized for research purposes. Subjects may be enrolled in the study to support participation in other DBS protocols.
Study Population
Patients 18 years and older with medically refractory PD, dystonia, and/or ET may participate in this study. Other indications will be added with subsequent amendments if FDA approval of deep brain stimulation is extended to other conditions.
Study Design
The treatment that is rendered in this protocol is standard of care for PD, dystonia, and ET. Patients confirmed to have medically refractory PD, dystonia or ET will be offered DBS as a therapeutic option per standard of care procedures and routine clinical care. Patients will be evaluated for their eligibility for the procedure and the risk/benefit balance for surgical therapy will be assessed (Lang et al., 2006). After completing the evaluation, a decision will be made on recommending the procedure. At that point the patients will be referred for the surgical intervention to the NIH Surgical Neurology Branch or to collaborating surgeons in the community. If the surgery is performed at the NIH, the Neurology DBS team can be involved in surgical planning, target selection, intraoperative physiology recording and testing, as specified under SNB protocols. After the surgery, the patients will be followed in the NIH DBS clinic and the DBS programming will be initiated and performed as outlined below. The patients will be followed up for at least two years, and then they will have the option to transfer their care back to the neurologists in the community or continue care with the NIH Neurology team until care in the community is available.
In addition, patients can be enrolled in the protocol at various points in relation to DBS surgery.
Data regarding the movement disorder of the subject and observations of their standard of care treatment will be collected. Data may be used for future research questions that are related to subjects movement disorder and/or treatment.
Outcome Measures
To evaluate effects of DBS before and after surgery using clinically-generated data on:
To evaluate effects of DBS before and after surgery on quality of life:
All data collected will be done as standard of care and all analysis will be retrospective.
4,573 studies on the registry are indexed under Parkinson Disease; 1,086 are open to participants now.
This study's planned enrollment of 300 is above the median of 40 across 3,353 interventional studies indexed under Parkinson Disease.
Browse Parkinson Disease studies →National Institute of Neurological Disorders and Stroke (NINDS) is the lead sponsor of 601 studies on the registry; 56 are open to participants now.
Of its 18 completed or terminated interventional studies of FDA-regulated products, 8 (44%) have results posted.
Counted across the registry records on this site, refreshed daily.
Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.
To be eligible for entry into the study, candidates must meet all the following criteria:
Have a clinical diagnosis of idiopathic PD, primary dystonia, or ET:
a. History of appropriate response to dopaminergic medication, with at least a 30% improvement in motor UPDRS with L-DOPA by history or in-clinic testing, for the PD patients. OR
b.Patients with tremor-dominant PD that do not respond to dopaminergic therapy and that exhibit a tremor score of at least 2 for tremor severity on at least one side of the body on the motor UPDRS examination.
For PD patients:
intractable disabling motor fluctuations (severe off periods, dyskinesias, or freezing spells) OR
For ET and dystonia:
intractable symptoms of ET or dystonia impacting at least 2 activities of daily living.
(Note: Inclusion criteria 4 and 5 can be met by historical report in patients who had DBS implanted outside the NIH)
EXCLUSION CRITERIA:
For those who have not had DBS:
Candidates will be excluded if they meet any of the following criteria:
Evidence of secondary or atypical parkinsonism/dystonia/tremor as suggested by:
For those who have had DBS:
- for ongoing stimulation, such as intractable side effects of DBS despite stimulation parameter adjustment
Underlined terms in the criteria open these too. Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
Before you join, the study team explains what taking part involves — its purpose, what happens, the risks and possible benefits — and answers your questions, so you can decide freely. Consent is usually recorded on a form (the informed consent form, ICF) signed by you or, where the law allows, by someone legally authorised to decide for you.
You can keep asking questions during the study, you are told of new information that matters, and you can choose to leave at any time.
Relapsed: the illness came back after treatment had worked. Refractory: it did not respond to treatment, or stopped responding while still on it.
Judged by the study doctor to matter for your health or for the study. It is a doctor’s decision, so ask the study team if you are unsure whether something counts.
A reason a treatment, test or procedure should not be given to a particular person, such as an allergy, another illness or a medicine they take.
Informed consent
Before you join, the study team explains what taking part involves — its purpose, what happens, the risks and possible benefits — and answers your questions, so you can decide freely. Consent is usually recorded on a form (the informed consent form, ICF) signed by you or, where the law allows, by someone legally authorised to decide for you.
You can keep asking questions during the study, you are told of new information that matters, and you can choose to leave at any time.
Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
Relapsed and refractory
Relapsed: the illness came back after treatment had worked. Refractory: it did not respond to treatment, or stopped responding while still on it.
Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
Clinically significant
Judged by the study doctor to matter for your health or for the study. It is a doctor’s decision, so ask the study team if you are unsure whether something counts.
Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
Contraindication
A reason a treatment, test or procedure should not be given to a particular person, such as an allergy, another illness or a medicine they take.
Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
Therapy
Device: Deep Brain Stimulation management
The DBS surgery will be performed according to standard of care in the centers of referral. If performed at the NIH, this will be done under protocol 11-N-0211 or other protocols permitting DBS surgery depending on future availability.
To provide DBS therapy and follow-up management
a. Severity of PD motor symptoms (measured by the UPDRS III scale) b. Changes in dystonia severity (measured by the Burke-Fahn-Marsden (BFM) dystonia rating scale (Burke et al., 1985) c. Changes in tremor severity (measured by the Tremor Rating Scale (TRS)) d. Levels of effective drug therapy for PD patients using the Levodopa Equivalent Drug Dosing (LEDD) e. Changes in behavior, performance of activities of daily living and complications of therapy as measured by the UPDRS I, II, and IV scales 2. To evaluate effects of DBS before and 1 year after surgery on quality of life: a. For PD patients (measured by UPDRS part II and other scales such as the PDQ-39) b. For the Dystonia and ET patients (measured by the SF-12 scale) 3. To evaluate radiographic correlation of DBS electrode position and clinical changes 4. To evaluate neurophysiological mechanisms of DBS and relevant basal ganglia physiology
Time frame: two years
To maintain a cohort of patients treated with DBS who can participate in other NIH protocols addressing the efficacy of functional surgery and the relevant physiology
To potentially enroll subjects in other NIH studies.
Time frame: ongoing
Data collection
All the data collected will be an outcome of standard of care and all analyses will be retrospective
Time frame: ongoing
To access other clinical outcome measures related to response to therapy
Data collection
Time frame: 2 years
To correlate radiographic data related to DBS electrode position with clinical changes
Data collection
Time frame: 2 years
To collect physiology data correlated with motor and cognitive function in these
Data collection
Time frame: 2 years
Plan to share: Undecided — The DBS programing and management provided in this protocol is standard of care and all data is obtained in the course of standard of care treatment and data will be analyzed retrospectively. Since many patients continue to receive ongoing care through this protocol, it is unclear whether it will be feasible to make individual patient data available. This will likely depend on the specific analysis and result.
From the registry record's own update history. This site started tracking changes on Sep 25, 2026; for anything earlier, see the record history on ClinicalTrials.gov ↗
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National Institute of Neurological Disorders and Stroke (NINDS) →