STXBP1 and SYNGAP1 Related Disorders Natural History Study

Recruiting Observational Study
Genetic Disease STXBP1 Encephalopathy With Epilepsy SYNGAP1-Related Intellectual Disability
No Placebo Group Every participant receives an active treatment — no one gets a placebo. No Study Drug Researchers observe your health over time — no experimental treatment is given.
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At a Glance
Sex
Any
Study type
Observational
Participants needed
600 (estimated)
Sponsor
Children's Hospital of Philadelphia · Other
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About This Trial
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 clini…
Trial Locations
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Eligibility Criteria
Inclusion Criteria: * Male or female of any age. * Presence of a STXBP1 or SYNGAP1 gene mutation. The variant in STXBP1 or SYNGAP1 must be classified as causative based on clinical and variant classification criteria. Historical documentation is sufficient to support eligibility for the study. Conf…
Contacts

Joeylynn Nolan, RRT NPS AE-C

2674411813

COYNEJ@chop.edu

CONTACT

Victoria Chisari, BA, NS

ChisariV@chop.edu

CONTACT