SYNGAP1 Research Opportunities for Families to Join
Studies that SRF has reviewed and encourage families to join
SYNGAP1 Natural History Study at The Center for Epilepsy and Neurodevelopmental Disorders (ENDD) at Children's Hospital of Philadelphia (CHOP)
Enrolling
Funding:
Inclusion Criteria:
A diagnosis of SYNGAP1 *All ages
How to sign up:
Send your child's name, age, location to endd@chop.edu with the subject "Syngap1 NHS." Please cc mike@curesyngap1.org, sydney@curesyngap1.org, lauren@curesyngap1.org, corey@curesyngap1.org
Ciitizen Digital Natural History Study
Enrolling
Funding:
SRF
Inclusion Criteria:
A diagnosis of SYNGAP1
How to sign up:
Go to link: http://www.ciitizen.com/syngap1
Communication abilities in children with genetic conditions
Enrolling
Funding:
Grant funded
Inclusion Criteria:
--You are a parent/caregiver of a child diagnosed with a genetic condition --Your child is able to engage in some form of communicative behaviour --Your child is aged 2 years – 15 years 11 months old
How to sign up:
Go to: https://sites.google.com/sheffield.ac.uk/genetic-conditions-sheffield/home
RARE-X SYNGAP1 - Data Collection Program
Enrolling
Funding:
Rare-X is a 501(c)(3) who raises their own support.
Inclusion Criteria:
-- SYNGAP1 diagnosis
How to sign up:
Contact Corey Baysden, SRF: corey@syngapresearchfund.org
SYNGAP Seizure Tracker Study
Waitlist
Funding:
Praxis
Inclusion Criteria:
--SYNGAP1 diagnosis --Enrolled in Ciitizen
How to sign up:
Contact Corey Baysden, SRF: corey@syngapresearchfund.org
Cook Children's SYNGAP1 research program
Enrolling
Funding:
Cook Children’s Health Foundation
Inclusion Criteria:
SYNGAP1 Diagnosis and up to 18 years of age
How to sign up:
Contact Corey Baysden, SRF: corey@syngapresearchfund.org
Simons Searchlight Registry for SYNGAP1
Enrolling
Funding:
Simons Foundation
Inclusion Criteria:
-- SYNGAP1 diagnosis
How to sign up:
Contact Corey Baysden, SRF corey@syngapresearchfund.org
Overnight EEG Study
Enrolling
Funding:
Inclusion Criteria:
-- SYNGAP1 Diagnosis -- Ages 2-16
How to sign up:
Contact Corey Baysden, SRF: corey@syngapresearchfund.org
Observer-Reported Communication Ability (ORCA) Measure
Waitlist
Funding:
FDA
Inclusion Criteria:
-- A caregiver or parent of a child between the ages of 1 and 19 with a diagnosis of SYNGAP1 -- Are able to speak and read English -- Are able to participate in a 1 hour interview conducted via phone, Zoom or Webex
How to sign up:
Contact Kali Worth, SRF: kali@syngapresearchfund.org
Eye Tracking Measure for SYNGAP that Tracks Thinking Skills & Behavior
Waitlist
Funding:
SRF & others
Inclusion Criteria:
-- A diagnosis of SYNGAP1A participating parent, other family member, or close informant -- Age 3–45 -- Access to a reliable internet connection
How to sign up:
Contact Corey Baysden, SRF: corey@syngapresearchfund.org
Understanding Rare Genetic Epilepsies
Enrolling
Funding:
PI Grants
Inclusion Criteria:
-- 18+ year old with SYNGAP1 diagnosis
How to sign up:
Contact Lauren Perry, SRF: lauren@syngapresearchfund.org
Biomarker Study of Children with SYNGAP1 Variants - UCLA
Now Enrolling
Funding:
SRF
Inclusion Criteria:
-- SYNGAP1 diagnosis -- Enrolled in Ciitizen
How to sign up:
Contact Corey Baysden, SRF: corey@syngapresearchfund.org
Biomarker Study of Children with SYNGAP1 Variants (Boston)
Waitlist
Funding:
SRF
Inclusion Criteria:
How to sign up:
Contact Corey Baysden, SRF: corey@syngapresearchfund.org
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