Last recruitment call for the BOS EEG Study.
We are looking for 5 more people! Are your loved one the one to be part of this special study for Bohring-Opitz Syndrome?
Our BOS family is strong because we learn from each other! We are grateful for the research opportunities focused on improving the lives of our children.
Please consider taking the BOS Puberty Survey!
How can you contribute
ASXL Registry Team would like to learn more about how puberty impacts individuals with ASXL syndromes! Anyone with an ASXL syndrome of any age is eligible to participate in the ASXL Puberty Survey conducted by a research team at UCLA. Study participation includes a 10-20 minute electronic survey to be completed by a parent/caregiver with the option to share medical records that may help researchers understand your child’s growth and development (such as bone scans, medical imaging, and growth charts).
Your loved one must be enrolled in the ASXL Registry at UCLA to participate in the ASXL Puberty Survey. To check your enrollment status in the ASXL Registry or to inquire about the ASXL Puberty Survey, please contact asxl-chromatin-registry@mednet.ucla.edu
Thank you!
Bohring-Opitz Syndrome/ASXL1 