Registry and Natural History of Epilepsy-Dyskinesia Syndromes

Recruiting Observational Study
Epilepsy-Dyskinesia Epilepsy Dyskinesia EDS Epilepsy-Dyskinesia Syndomes Epilepsy in Children Dyskinesias Movement Disorders in Children Neurologic Disorder Chorea Myoclonus Ataxia Dystonia Disorder Movement Disorders
No Study Drug Researchers observe your health over time — no experimental treatment is given.
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At a Glance
Age
0 – 30
Sex
Any
Study type
Observational
Participants needed
700 (estimated)
Sponsor
Boston Children's Hospital · Other
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About This Trial
The Registry and Natural History of Epilepsy-Dyskinesia Syndromes is focused on gathering longitudinal clinical data as well as biological samples (blood, urine, and/or skin/tissue) from male and female patients, of all ages, who have a genetic diagnosis of epilepsy-dyskinesia syndromes. Through prospective review and molecular data analysis, the study aims to identify patterns and correlations be…
Trial Locations
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Eligibility Criteria
Inclusion Criteria: * Having at least one pathogenic or likely pathogenic variant in one of the genes of interest: AARS2, ADCY5, ALG13, AP3B2, AP4B1, AP4E1, AP4M1, AP4S1, ARX, ATP1A3, CACNA1A, CACNA1E, CACNA2D2, CDKL5, CSTB, DARS2, DLAT, DLD, DNM1, EARS2, EPG5, EPM2A, FARS2, FOXG1, FRRS1L, GABRA1,…
Contacts

Darius Ebrahimi-Fakhari, MD, PhD

617-355-0097

movementdisorders@childrens.harvard.edu

CONTACT

Josh Rong, BS

617-355-0903

movementdisorders@childrens.harvard.edu

CONTACT