DBSMatchMaker: Connecting clinicians globally for deep brain stimulation in rare diseases

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Deep Brain Stimulation (DBS) is increasingly recognized as a powerful therapeutic intervention for pediatric and adult patients with rare genetic movement disorders. In some cases, the treatment response can be transformational. However, the inherent rarity of genetic movement disorders often makes clinical decision-making challenging, as individual clinicians and institutions frequently encounter only a handful of cases. With anecdotal evidence often serving as the primary guide, clinicians sometimes struggle to assess suitability for DBS, leading to variability in patient outcomes. 

To address this critical need, our recent initiative, DBSMatchMaker, seeks to bridge this gap by connecting clinicians globally who manage patients with rare genetic movement disorders. Inspired by the success of GeneMatcher in the genetics community, DBSMatchMaker provides a streamlined, secure platform for clinicians to identify peers with similar clinical experiences, fostering collaborative decision-making and enabling the aggregation of shared knowledge. 

The platform is intentionally designed for simplicity and impact. Clinicians input minimal but key patient data: the genetic condition, the DBS target (planned or actual), and consent to share contact information. Optionally, clinicians can record treatment responses using a straightforward, three-point scale (strong, modest, or no therapeutic effect). Once submitted, the system automatically searches for relevant matches and notifies clinicians of peers with similar experiences. If no immediate match is found, submissions remain available for future connections. 

DBSMatchMaker prioritizes privacy: No identifiable patient data are collected or searchable, encouraging broad participation and easing ethical concerns. Early feedback highlights the platform’s accessibility and utility in real-world clinical settings, offering reassurance to clinicians who previously relied on isolated, anecdotal experiences.  

Since its launch at the end of December 2024, the DBSMatchMaker platform has already received more than 120 submissions from more than 30 centers in 16 countries. Our early experience underscores the platform’s potential to reduce uncertainties in DBS patient selection for rare disorders both in children and adults, supporting evidence-based clinical decisions and enhancing patient counseling. As DBSMatchMaker continues to grow, we anticipate significant contributions to clinical practice guidelines and increased research collaboration worldwide, ultimately elevating standards of care for patients with genetic movement disorders. 

We enthusiastically invite clinicians worldwide to participate in this global initiative. Each submission strengthens this collaborative platform. Together, we can build shared expertise, answer critical questions for our patients, and improve outcomes for patients and families navigating these complex conditions. 

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