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Global brain surgery matchmaker aims to help kids with rare movement disorders

NCT ID NCT06912841

Knowledge-focused Sponsor: Boston Children's Hospital Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only This study
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 25, 2026 · Last updated Jun 27, 2026 · Updated 1 time

Summary

This study is building an online platform called DBS MatchMaker to connect doctors around the world who treat rare movement disorders with deep brain stimulation (DBS). The goal is to help doctors share knowledge and find the best ways to treat patients. Up to 500 people of all ages with genetic movement disorders who are having or considering DBS can participate.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

What this could lead to
If successful, this platform could help doctors worldwide better treat rare movement disorders by sharing experiences and improving patient selection for DBS.
What could go wrong
This is an observational platform, not a treatment trial. It may not directly improve outcomes, and its success depends on clinician participation and data sharing.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

About 500 people

The number the study aims to enrol. It can still change while the study runs.

Started

Dec 2024

Expected to finish

Dec 2030

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

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).

Ages

Children (under 18), adults (18 to 64) and older adults (65 and over)

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

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.

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Conditions

The condition(s) this trial relates to.

choreatic disease Dystonia dystonia 28, childhood-onset dystonic disorder movement disorder myoclonus-dystonia syndrome pantothenate kinase-associated neurodegeneration PLA2G6-associated neurodegeneration

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

ADCY5 CHOREA Dystonia EIF2AK2 GABRB2 GNAO1 GNB1 HPRT1 KMT2B Movement disorders PANK2 PLA2G6 SGCE SOX2 TNPO2 TOR1A UBA5

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    1 site. The list below names each one and where it is.

  2. The official record

    The full official record for this study. This one lists no contact details, but it is the first place any would appear.

    Open the record ↗

  3. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Locations

  • Boston Children's Hospital

    Boston, Massachusetts, 02115, United States

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