Principal investigator: FOXG1 Research Foundation in partnership with COMBINEDBrain
About the study:
COMBINEDBrain is a non-profit consortium of over 60 patient advocacy groups for rare, genetic neurodevelopmental disorders. They recognize the need to collect patient samples for researchers to identify biomarkers to be used to treat /develop treatments for our children. They are on a mission to collect ~500 samples from our member organizations over the next 6-8 months and the FOXG1 Research Foundation is one of them. Samples collected from our community will be stored and available to researchers across the world.
Are you or one of your family members interested in participating in this exciting project for FOXG1-related disorders ?
Here are the basics:
Who can participate?
Any participant diagnosed with FOXG1 syndrome and unaffected sibling.
What does participation involve?
COMBINEDBrain will be collecting urine samples and blood samples (processed for plasma and a finger stick) to be stored in the COMBINEDBrain Biorepository and available for select biomarker projects as well as other interested researchers. They will also collect several online surveys to be completed by caregivers.
Where can you participate?
COMBINEDBrain is collecting samples all across the United States this year. Please see the list below of locations to find the closest biorepository collection to you. You may attend ANY of these meetings
Sample size: The goal is to collect 20 samples from each patient group
How to enroll
Please contact [email protected] to determine the best way and location to participate.
Use of Clinical Research ID (CRID)
This study uses a CRID, or Clinical Research ID. This is a unique identification number generated and known only to the participant. This ID number allows researchers to merge data across research projects without any personally identifying information from the participant.
Please obtain a CRID prior to enrolling in this study, which is a simple online process that takes 2-3 minutes.
Then, please add your CRID to your FOXG1 Patient Registry Profile HERE
Biorepository collection locations:
COMBINEDBrain, August 6th, 9am-5pm (Courtyard by Marriott New York Queens/Fresh Meadows
183-15 Horace Harding Expy, Queens, NY 11365)
GLUT1 Deficiency, August 26th, 9am-5pm (Embassy Suites, 13700 Conference Center Drive South, Noblesville, IN 46060)
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RF2BPL Foundation, Sept 22nd-23rd 2023 (Home 2 Suites by Hilton, 7145 Liberty Centre Drive, Liberty Township, OH 45069, 513-644-2207)
KCNQ2 Cure Alliance Conference, Sept 29th-30th 2023 (Hilton Hotel Chicago 300 E Ohio St, Chicago, IL 60611)
NARS1 Conference, October 1st, 9am-5pm (13550 Commerce Blvd Rogers, MN 55374)
Prader-Willi Syndrome/USP7 Foundation, October 5-7 (1672 Lawrence St, Denver, CO 80202)
TBRS Community, Oct 12th-14th 2023 (Morgan’s Wonderland, 5223 David Edwards Dr, San Antonio, TX 78233)
COMBINEDBrain Meeting, Oct 15th-16th 2023 (Washington DC)