Plain-English translation of NCT06625112 on ClinicalTrials.gov โ ยท Source last updated ยท Translation generated ยท How we translate trials
This is a natural history study โ meaning researchers will follow people with STXBP1-related disorders over time to understand how the condition progresses and affects daily life. By collecting detailed information about symptoms, medical history, and how people manage their care, the study aims to create a comprehensive picture of STXBP1 disorders. This information will help doctors design better treatments and clinical trials in the future.
Right now, there is no cure for STXBP1-related disorders, and doctors don't have a standard way to treat or monitor the condition. By documenting how this disorder develops and changes over time, researchers hope to identify which patients might benefit most from new treatments and establish what measurements doctors should use to track progress in future trials.
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As a participant, you would share your medical records, genetic test results, and information about your symptoms and daily functioning with the research team. You may be asked to complete surveys or assessments about how the condition affects you or your family member. The study is designed to follow participants over time, so there may be periodic check-ins, but the exact schedule will be explained to you when you enroll.
AI-generated summary from trial data ยท Jun 13, 2026 ยท Not medical advice
Belgium
Filadelfia Epilepsy Hospital, University Hospital Heidelberg
Enrollment target
~120 participants
Started
November 2025
Primary completion
October 2029
Last updated on clinicaltrials.gov in February 2026.
Reach out to the team running this trial. Response times vary โ some teams are faster than others.
Central contact
Kelsey Ax
Amsterdam UMC
Tell us you're interested and we'll help connect you with the research team. We'll walk you through what to expect first โ no email needed to get started.