What is involved?
- Sharing of medical records, genetic testing records, and imaging
- Survey questionnaires
- A total of 1-2 hours of participating, can be completed at home
- Blood draw/saliva sample and/or skin biopsy (optional)
Who can participate?
- People with an identified DDX3X mutation
- If under 18, parent/guardian MUST participate along with minor
- Both parents will be asked to participate, if available
How to participate?
- Complete the following web-based initial interest intake form: https://redcap.ucsf.edu/surveys/?s=e5zvYW.
- Once completed, a research coordinator will contact you to review eligibility requirements and enrollment procedures
- You can also contact the study team directly: (415) 502-8039, or email Brieana.Fregeau@ucsf.edu or Lindsey.Suit@ucsf.edu