Deep Brain Stimulation (DBS) MatchMaker

NCT ID: NCT06912841

Last Updated: 2025-04-06

Basic Information

• Recruitment Status: ENROLLING_BY_INVITATION
• Total Enrollment: 500 participants
• Study Classification: OBSERVATIONAL
• Study Start Date: 2024-12-01
• Study Completion Date: 2030-12-01

Brief Summary

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.

Detailed Description

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.

Conditions

TOR1A; PANK2; HPRT1; EIF2AK2; SOX2; KMT2B; GABRB2; ADCY5; UBA5; GNAO1; SGCE; TNPO2; GNB1; PLA2G6; Movement Disorders; Dystonia; Chorea

Study Design

• Observational Model Type: COHORT
• Study Time Perspective: OTHER

Eligibility Criteria

Inclusion Criteria

• Individuals of all ages with genetic movement disorders, who are undergoing or being considered for DBS treatment.

Exclusion Criteria

• Individuals who have not undergone DBS treatment.

• Eligible Sex: ALL
• Accepts Healthy Volunteers: No

Sponsors

Boston Children's Hospital

OTHER

Sponsor Role: lead

Responsible Party

Darius Ebrahimi-Fakhari

Darius Ebrahimi-Fakhari, MD, PhD

Responsibility Role: PRINCIPAL_INVESTIGATOR

Locations

Boston Children's Hospital

Boston, Massachusetts, United States

Countries

United States

Related Links

https://www.dbsmatchmaker.com/

Related Info

Other Identifiers

IRB-A00047069

Identifier Type: -

Identifier Source: org_study_id