Registry and Natural History of Epilepsy-Dyskinesia Syndromes
Part of paid clinical trials in Boston, Massachusetts.
- Sponsor
- Boston Children's Hospital
- Study ID
- NCT06967727
- Status
- Recruiting
Conditions
- Ataxia
- Chorea
- Dyskinesia
- Dyskinesias
- Dystonia Disorder
- EDS
- Epilepsy
- Epilepsy in Children
- Epilepsy-Dyskinesia
- Epilepsy-Dyskinesia Syndomes
- Movement Disorders
- Movement Disorders in Children
- Myoclonus
- Neurologic Disorder
Eligibility Criteria
- Sex
- ALL
- Age
- 0 Years - 30 Years
- Healthy Volunteers
- Not accepted
Study Details
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 between movement and seizure disorders, uncovering genotype-phenotype relationships. The initiative's goals are to enhance understanding of epilepsy-dyskinesia syndromes, inform precision medicine approaches, and foster international collaboration.
Key Dates
- Start date
- Jun 1, 2025
- Status verified
- Aug 2025
- Primary completion
- Jun 1, 2030
- Completion
- Jul 31, 2030
Study Design
- Enrollment
- 700 participants (estimated)
Primary Outcome Measure
Creation of Biorepository [ Time Frame: 5 years ]
Central Contacts
- Darius Ebrahimi-Fakhari, MD, PhD617-355-0097
- Josh Rong, BS617-355-0903
Locations (1)
| Facility | City | State | ZIP | Site coordinators |
|---|---|---|---|---|
| Boston Children's Hospital | Boston | Massachusetts | 02115 | - |
Find similar trials in Boston, MA
By condition
By specialty
By research site
Related Studies
- Human Epilepsy Genetics--Neuronal Migration Disorders StudyRecruiting · Harvard University Faculty of Medicine · Boston, Massachusetts
- Genetics of Epilepsy and Related DisordersRecruiting · Boston Children's Hospital · Boston, Massachusetts
- Abbott DBS Post-Market Study of Outcomes for Indications Over TimeRecruiting · Abbott Medical Devices · Tucson, Arizona
- Methylphenidate for the Treatment of Epilepsy-related Cognitive DeficitsPHASE4 · Recruiting · VA Office of Research and Development · Miami, Florida