Deep Brain Stimulation (DBS) MatchMaker

NCT06912841 | Enrolling By Invitation

• 1 other identifier: IRB-A00047069
• Study Type: observational
• Target: 500
• Locations: 1 country
• Sites: 1

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.

Conditions

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

Keywords

Deep Brain Stimulation; DBS; movement disorders; dystonia; genetic

Outcome Measures

Primary Outcomes (2)

• 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.

  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.

  5 years

Eligibility Criteria

• Sex: all
• Healthy Volunteers: No
• Age Groups: Child (0-17), Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

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).

You may qualify if:

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

You may not qualify if:

• Individuals who have not undergone DBS treatment.

Sponsors & Collaborators

• Boston Children's Hospital: lead

Study Sites (1)

Boston Children's Hospital

Boston, Massachusetts, 02115, United States

Location

Related Links

• Related Info

MeSH Terms

Conditions

Movement Disorders; Dystonia; Chorea

Condition Hierarchy (Ancestors)

Central Nervous System Diseases; Nervous System Diseases; Dyskinesias; Neurologic Manifestations; Signs and Symptoms; Pathological Conditions, Signs and Symptoms

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: OTHER
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Darius Ebrahimi-Fakhari, MD, PhD

Study Record Dates

• First Submitted: December 27, 2024
• First Posted: April 6, 2025
• Study Start: December 1, 2024
• Primary Completion (Estimated): December 1, 2029
• Study Completion (Estimated): December 1, 2030
• Last Updated: April 13, 2026

Record last verified: 2026-04

Data Sharing

• IPD Sharing: Will not share

Locations

US (1)