The BioGENE Study:
​SETBP1 Participants page

Thanks to a generous grant from the Million Dollar Bike Ride program and SETBP1 Society,  we are thrilled to announce that we are launching BioGENE data collection with SETBP1 families! The goal of this study is to capture and develop brain "markers" that are unique to SETBP1 haploinsufficiency disorder (SETBP1-HD). We use special EEG "wet" nets that can be put on in a matter of seconds and an easy-to-apply heart monitor! 

We are currently recruiting: Participants of all ages with a known SETBP1-HD or SETBP1 related disorder

We will be at the SETBP1 Family & Research Conference in Austin, Texas Thursday October 10, until Sunday October 13, 2024. 

​View the calendar below for available slots and fill out the participant sign-up! Our project coordinator, Ashlan Cheever will reach out to you!

If you are not able to join us at the conference but are interested in participating, please still fill out the form below! We will be organizing a "tour" across the United States (and potentially abroad) and can let you know when we will be in your area.

We look forward to meeting you!

Upcoming research opportunities 

The B-RAD Lab will be at SETBP1 Family & Research Conference Austin, TX Thursday October 10 until Sunday October 13, 2024 
We have now opened slots for research participation. Some helpful information:

• Participants who have done the BioGENE study before are able to sign up again -- we are interested in how the brain changes over time!
• Participants should have a loss-of-function variant (SETBP-HD disorder or SETBP1-RD) -- or have a variant with unknown function. If you are not sure, reach out and we can review the participant's genetic information with you.
• Research will be completed in a room at the conference hotel, the Scofield Room.
• Research includes parent surveys (can be completed online! <30 minutes) and an EEG session for the participant with a SETBP1-HD/RD mutation (see below).
• 45-minute slots are listed below.   Sign-up below and our research coordinator, Ashlan Cheever, will reach out to you!

Here is one of participants wearing our EEG net along side a bear buddy!

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What to expect!

What to expect during a BioGENE research session -- Austin conference edition:

• If you have not completed consent forms prior to your session, we will review consent forms with you and answer any questions. While this is being done, a team member will help the participant get comfortable in our experiment room.
• We will measure the participant's head then soak their EEG net for ~5-10 minutes. It only takes a few seconds to put on the net and make a few adjustments. We will also be recording heart rate by placing ECG stickers on the participant's chest. 
• The participant will watch our videos or they can watch their own tablet or movies on mute. We will play different sounds and videos for ~20-30 minutes. 
• Parents/caregivers will be given a packet of surveys or questionnaires to complete. These can also be filled out before, during or after the session. These should take less than 30 minutes. 

What to expect before a BioGENE research session:

• We will confirm your session time and send you information regarding our EEG research (the who's, what's, when's, and where's).
• If you would like, you can start completing the consent form and parent surveys (<30 minutes) online prior to the session.
  • You can start and come back to them later. 
• We will also ask you to send our team a copy of the participant's genetic report.
• Once the prior steps are complete, we would like to schedule a brief screening call, (10-15 minutes) so we can ensure that we can cater to our participant's needs and interests!

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What to expect during a BioGENE research slot -- "home visits":

• We will be planning research visits that can take place in a quiet part of your home or nearby hotel. Similar procedures as above, but might require a longer time to account for equipment set up.

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