In this recorded webinar, student researcher Amanda Piring, endocrinologist Rebecca Hicks, MD, and clinical geneticist Bianca Russell, MD (all from the University of California Los Angeles) share the results of the ASXL Puberty Survey that was conducted in early 2023.
The research team discusses the major findings of the ASXL Puberty Study and takes questions from families about puberty-related issues including precocious puberty (early puberty), emergence of seizures with puberty, advanced bone age and bone density, and menstrual management. These findings were published in the American Journal of Medical Genetics in August 2025.
Published: November 2023
Additional related resources include:
- Understanding puberty in neurodevelopmental disorders (educational session)
- ASXL Puberty Survey (research study)
- Assessing pubertal timing, duration, and related characteristics in ASXL-related disorders: A cross-sectional caregiver survey analysis (research article)
The information presented here is for educational purposes only. This information is not medical advice and should not be treated as such. You should always talk to your or your family member’s health care professionals for diagnosis and treatment, including information regarding which drugs or treatment may be appropriate for you or your family member. We do not represent or warrant that any particular treatment is safe, appropriate or effective for you or your family member. In the event of a medical emergency, you should contact your doctor immediately or call your local emergency service.
