The BioGENE Study:
SETBP1 Participants page
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Thanks to a generous grant from the Million Dollar Bike Ride program and SETBP1 Society, we were able to meet 32 SETBP1 Bees and their families on our BioGENE data collection trips during 2024-2025! 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!
Check out some photos (right) from our year! |
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What to expect!
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!
- 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.
- 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.