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

PACIFIC Developmental and Epileptic Encephalopathies Study

Enrolling

Funding:

Inclusion Criteria:

-- SYNGAP1 diagnosis -- 12 to 65 years of age -- Located near study sites in US and Australia -- On stable dose of 1-4 anti-seizure meds -- At least 4 motor seizures a month

How to sign up:

Go to link: https://pacific.researchstudytrial.com/

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

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

Pending IRB approval

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