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Study identifier: NCT06593951 Synced from ClinicalTrials.gov · July 29, 2026
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Registry and Natural History Study for Progressive Myoclonus Epilepsy Type 1 (EPM1)

Condition: Progressive Myoclonus Epilepsy Type 1 · EPM1 · CSTB-related Disease  ·  Sponsor: Boston Children's Hospital

PhaseN/A
Planned participants200
Who can joinAll sexes, N/A to no upper limit
Healthy volunteersNo

About this study

The Registry and Natural History Study for Progressive Myoclonus Epilepsy Type 1 (EPM1) is focused on gathering longitudinal clinical data as well as biological samples (blood and/or urine) from male and female patients, of all ages, who have a molecular diagnosis of EPM1or CSTB-null-related disease. Currently, there are no therapies that halt disease progression in any CSTB-related diseases, highlighting the urgency for translational research into this condition. The primary objective of the registry is to determine the natural history and genotype-phenotype correlations of disease-causing variants in EPM1 and CSTB-null-related disease.

This description comes directly from the study's public registry record.

Talk to the study team

Darius Ebrahimi-Fakhari, MD, PhD.  ·  617-355-0097  ·  movementdisorders@childrens.harvard.edu

Joshua Rong, BS.  ·  617-355-0903  ·  movementdisorders@childrens.harvard.edu

Always discuss trial participation with your own doctor first.

Locations (1)

Boston Childrens HospitalBoston, Massachusetts, United StatesRecruiting

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Source record: clinicaltrials.gov/study/NCT06593951