An observational study in TOR1A, PANK2 and HPRT1, sponsored by Boston Children's Hospital. Enrolling by invitation at 1 site in United States. Per ClinicalTrials.gov, last updated 2026-04-13.
Sponsored by Boston Children's Hospital · Observational
DBS Matchmaker (https://www.dbsmatchmaker.com) is a platform designed to connect clinicians worldwide who are treating rare movement disorders with deep brain stimulation (DBS). It facilitates global collaboration and knowledge sharing to enhance patient care by improving patient selection, counseling, treatment, and outcomes for individuals with movement disorders.
Deep brain stimulation (DBS) is an effective treatment for childhood-onset dystonia and other hyperkinetic disorders, with emerging evidence supporting its use in an expanding range of monogenic movement disorders. While some conditions, such as TOR1A-related dystonia, are well-established indications for DBS, many rare and ultra-rare movement disorders are also being considered for treatment. However, individual centers often have limited experience with these conditions, leading to mostly anecdotal observations. Furthermore, the published literature is often scarce or not up to date.
To bridge this gap, DBSMatchMaker (https://www.dbsmatchmaker.com) was developed both as a tool to assist clinicians in determining the appropriateness of DBS for their patients, and in supporting therapy adjustments for patients who already have an implant. By connecting specialists worldwide, DBSMatchMaker seeks to improve patient selection, counseling, treatment, and outcomes for individuals with rare movement disorders, ultimately enhancing care for this underserved patient population.
By connecting specialists worldwide, the platform aims to:
Improve patient selection and counseling; Enhance treatment strategies and outcomes for individuals with rare movement disorders; Ultimately, DBSMatchmaker seeks to elevate the standard of care for this underserved patient population.
Key Features:
Global Collaboration: Enables clinicians to connect with peers treating similar conditions with DBS, fostering a worldwide network of specialists.
Knowledge Sharing: Facilitates the exchange of experiences and expertise in DBS treatment, promoting collaborative learning.
Enhanced Patient Care: Aims to improve treatment outcomes through shared insights and collective knowledge.
How It Works:
Clinicians can submit information about their cases to DBS Matchmaker. The platform adheres to strict safety and privacy protocols; it does not collect identifiable data, and the database is not searchable by users. Submitted data may be shared with potential collaborators to facilitate connections between medical centers treating similar cases.
Developed by the Ebrahimi-Fakhari Laboratory at Boston Children's Hospital, DBS Matchmaker is committed to advancing the care of individuals treated with DBS for rare movement disorders.
371 studies on the registry are indexed under Movement Disorders; 102 are open to participants now.
This study's planned enrollment of 500 is above the median of 67 across 140 observational studies indexed under Movement Disorders.
Browse Movement Disorders studies →Boston Children's Hospital is the lead sponsor of 608 studies on the registry; 147 are open to participants now.
Of its 32 completed or terminated interventional studies of FDA-regulated products, 19 (59%) have results posted.
Counted across the registry records on this site, refreshed daily.
The study population consists of individuals with rare genetic movement disorders characterized by childhood-onset dystonia and other hyperkinetic disorders. Cases involve individuals being considered for or undergoing treatment with deep brain stimulation (DBS).
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.
Exclusion Criteria:
Identify Potential Matches
Clinicians can submit their DBS cases through a secure platform (https://www.dbsmatchmaker.com/), which are then reviewed to identify potential matches with other centers treating similar cases. When a match is found, direct connections between medical teams are facilitated to promote collaboration and knowledge sharing.
Time frame: 5 years
Connect Clinicians & Facilitate Collaboration
DBS Matchmaker is a platform designed to connect clinicians worldwide who are treating rare movement disorders with deep brain stimulation (DBS). It facilitates global collaboration and knowledge sharing to enhance patient care.
Time frame: 5 years
Plan to share: No
Eligibility is decided by the study team. Share this record with your doctor or contact the team directly.
No contact was published for this record. The registry link below has the sponsor’s details.
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