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Study identifier: NCT06555965 Synced from ClinicalTrials.gov · July 29, 2026
● Recruiting

STXBP1 and SYNGAP1 Related Disorders Natural History Study

Condition: Genetic Disease · STXBP1 Encephalopathy With Epilepsy · SYNGAP1-Related Intellectual Disability  ·  Sponsor: Children's Hospital of Philadelphia

PhaseN/A
Planned participants600
Who can joinAll sexes, N/A to no upper limit
Healthy volunteersNo

About this study

The purpose of this study is to find out more about STXBP1 and SYNGAP1 related disorders. The information gathered by this study will be used to prepare for clinical treatment trials. The primary objective of the study is to better define and outline the clinical spectrum of STXBP1 and SYNGAP1 through detailed developmental, seizure, and quality of life assessments as an extension of routine clinical care.

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

Talk to the study team

Joeylynn Nolan, RRT NPS AE-C  ·  2674411813  ·  COYNEJ@chop.edu

Victoria Chisari, BA, NS  ·  ChisariV@chop.edu

Always discuss trial participation with your own doctor first.

Locations (5)

Stanford Medicine Children's HealthPalo Alto, California, United StatesRecruiting
Children's Hospital ColoradoAurora, Colorado, United StatesRecruiting
Weill Cornell MedicineNew York, New York, United StatesRecruiting
The Children's Hospital of PhiladelphiaPhiladelphia, Pennsylvania, United StatesRecruiting
Texas Children's HospitalHouston, Texas, United StatesRecruiting

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Source record: clinicaltrials.gov/study/NCT06555965