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

NCT ID NCT06912841

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

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.

Get updates

Get notified about this study

Sign up to get updates when this study changes or when new studies for ADCY5 are added.

Our safety recommendation!

By submitting, you agree to our Terms of use

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

Contacts and locations

Show contact details

Locations

Boston Children's Hospital

Boston, Massachusetts, 02115, United States

More trials for these conditions

Other studies related to the condition(s) this trial covers.