Connecting Clinicians for Rare Movement Disorders

Deep brain stimulation (DBS) has proven to be an effective treatment for both pediatric and adult patients with dystonia and other hyperkinetic disorders, and evidence is continually emerging to support its use in an expanding range of monogenic movement conditions. While some disorders, such as TOR1A-related dystonia, are well-established indications for DBS, many rare and ultra-rare movement disorders remain less understood. As a result, individual centers often have limited experience, with decision-making frequently guided by anecdotal observations rather than robust data.

To bridge this gap, DBSMatchMaker was developed to connect clinicians around the world—enabling them to determine the appropriateness of DBS for patients of all ages and to provide guidance on therapy adjustments for those already treated. By facilitating global collaboration, DBSMatchMaker aims to improve patient selection, counseling, treatment strategies, and overall outcomes for individuals with rare movement disorders.

Connecting Clinicians Worldwide to Advance the Care of Children Treated with Deep Brain Stimulation (DBS)

Global Collaboration

Connect with clinicians worldwide treating similar conditions with DBS

Knowledge Sharing

Learn from others' experiences and share your expertise in DBS treatment

Better Patient Care

Improve treatment outcomes through collaborative learning and shared insights

How It Works

DBSMatchMaker Process

Genes in Database

TOR1A
PANK2
HPRT1
EIF2AK2
SOX2
KMT2B
GABRB2
ATP1A3
ADCY5
UBA5
GNAO1
SGCE
TNPO2
GNB1
PLA2G6
HPCA
Strong benefit
Modest benefit
No benefit
Undetermined

Collaborating Centers

Children's National Hospital Logo
Boston Children's Hospital Logo
The Children's Hospital at Westmead Logo
Ankara Yildirim Beyazit University Logo
Sant Joan de Déu Barcelona Hospital Logo
San Borja Hospital Logo
Children's National Hospital Logo
Boston Children's Hospital Logo
The Children's Hospital at Westmead Logo
Ankara Yildirim Beyazit University Logo
Sant Joan de Déu Barcelona Hospital Logo
San Borja Hospital Logo

DBSMatchMaker adheres to strict safety and privacy protocols. The database is not searchable and does not collect identifiable data. Users may not access the full database. By submitting information to DBSMatchMaker, you agree that the provided data may be shared with potential collaborators for the purpose of finding matches and facilitating connections between medical centers treating similar cases.