Participate in a Biomarker Research Project
COMBINEDBrain is traveling to a conference near you!
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 Glut1 Deficiency 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 the Glut1 Deficiency Foundation?
Here are the basics:
Who: Any participant diagnosed with Glut1 Deficiency or unaffected sibling.
What: COMBINEDBrain will be collecting urine samples and blood samples (processed for plasma and a finger stick) to be stored in the CB 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. You will need to have you or your child’s genetic report available.
Where: COMBINEDBrain is collecting samples all across the country this year. Please see the below list of locations to find the closest biorepository collection to you. You may attend ANY of these meetings:
Sample Size: Our goal is to collect 20 samples from each patient group.
How: Contact your patient advocacy group (PAG) leader to further determine eligibility and the best way and location to participate (contact Sandra Ojeda at [email protected]).
Cost: Plasma samples, urine samples, and finger sticks are free!
When: Any participant may attend ANY of the below CB conferences:
KDVS Foundation, July 19th-21st 2023 (Orlando, FL)
STXBP1 Foundation, July 21st-23rd 2023 (Westminster, CO)
Yellow Brick Road Project, July 30th-August 2nd (Jacksonville, FL)
KAND, August 3rd-6th 2023 (Queens, NY)
Glut1 Deficiency Foundation Research Ready Series, August 26th (Indianapolis, IN)
IRF2BPL Foundation, Sept 22nd-23rd 2023 (Cincinnati, OH)
KCNQ2 Cure Alliance, Sept 29th-30th 2023 (Chicago, IL)
USP7/Prader Willi, Oct 5th-7th 2023 (Denver, CO)
TBRS Foundation, Oct 12th-14th 2023 (San Antonio, TX)
COMBINEDBrain Meeting, Oct 15th-16th 2023 (Washington DC)
ADNP Kids Research Foundation, Oct 30th-Nov 1st (Los Angeles, CA)
SYNGAP1 Research Fund, Dec 1st-3rd 2023 (Orlando, FL)
SLC6A1 Connect, Dec 1st-3rd 2023 (Orlando, FL)
