SYNGAP1 Research Opportunities for Families to Join
Studies that SRF has reviewed and encourage families to join
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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