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Recruiting NCT06967727

NCT06967727 Registry and Natural History of Epilepsy-Dyskinesia Syndromes

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Clinical Trial Summary
NCT ID NCT06967727
Status Recruiting
Phase
Sponsor Boston Children's Hospital
Condition Epilepsy-Dyskinesia
Study Type OBSERVATIONAL
Enrollment 700 participants
Start Date 2025-06-01
Primary Completion 2030-06-01

Eligibility & Interventions

Sex All sexes
Min Age 0 Years
Max Age 30 Years
Study Type OBSERVATIONAL

Eligibility Fast-Check

Enter your details for a quick preliminary check. This does not replace medical advice.

What to Expect as a Participant

This is an observational study. You will not receive an experimental treatment; researchers will collect data based on your existing condition or standard treatment.

This trial targets 700 participants in total. It began in 2025-06-01 with a primary completion date of 2030-06-01.

⚠ This information is for research awareness only. Always consult your physician before joining any clinical trial. Participation is voluntary and you may withdraw at any time.

Brief Summary

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.

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, GABRA2, GABRB2, GABRB3, GABRG2, GNAO1, GRIA2, GRIA4, GRIN1, GRIN2A, GRIN2B, GRIN2D, HARS2, HNRNPU, HTT, IQSEC2, IRF2BPL, KCNA2, KCNB1, KCNC1, KCNMA1, KCNQ2, KCNQ3, KCNT1, LARS2, MECP2, MEF2C, MTND5, MTTK, MTTL1, NARS2, NHLRC1, PCDH12, PCDH19, PDE10A, PDE2, PDHA1, PDHB, PDHX, PDK3, PDP1, PIGA, PIGN, PIGP, PIGQ, PIGS, PLCB1, POLG, PRRT2, PURA, RHOBTB2, SCN1A, SCN1B, SCN2A, SCN8A, SCN9A, SETBP1, SETD5, SLC13A5, SLC1A2, SLC25A22, SLC2A1, SMC1A, SNX14, SPTAN1, ST3GAL3, STXBP1, SYNGAP1, SYNJ1, SZT2, TARS2, TBC1D24, UBA5, UBE3A, VAMP2, VARS2, WARS2, WDR45, WWOX, YIF1B, YWHAG, and other genes associated with epilepsy-dyskinesia syndromes. Exclusion Criteria: * Not having a pathogenic or likely pathogenic variants in the genes of interest

Contact & Investigator

Central Contact

Darius Ebrahimi-Fakhari, MD, PhD

✉ movementdisorders@childrens.harvard.edu

📞 617-355-0097

Frequently Asked Questions

Who can join the NCT06967727 clinical trial?

This trial is open to participants of all sexes, aged 0 Years or older, up to 30 Years, studying Epilepsy-Dyskinesia. Full inclusion and exclusion criteria are listed in the Eligibility Criteria section. Always confirm your eligibility with the research team before applying.

Is NCT06967727 currently recruiting?

Yes, NCT06967727 is actively recruiting participants. Contact the research team at movementdisorders@childrens.harvard.edu for enrollment information.

Where is the NCT06967727 trial being conducted?

This trial is being conducted at Boston, United States.

Who is sponsoring the NCT06967727 clinical trial?

NCT06967727 is sponsored by Boston Children's Hospital. The trial plans to enroll 700 participants.

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ClinicalMetric — Independent clinical trial intelligence platform. Not affiliated with NIH, ClinicalTrials.gov, the U.S. FDA, or any pharmaceutical company, hospital, or clinical research organization. Trial data is sourced from ClinicalTrials.gov for informational purposes only and does not constitute medical advice. Do not make any treatment, enrollment, or health decisions based solely on information found here — always consult a qualified healthcare professional. Full Disclaimer  ·  Last Reviewed: July 2026  ·  Data Methodology