Are you an adult with XLH, or a family member of someone who has XLH?
The XLH Network and Quinnipiac University are conducting a study to gather information about how individuals learn about their XLH diagnosis, and how they choose to use services such as genetic counseling and testing. The study, created with input from families living with XLH will have two parts:
1. A confidential online survey, open to all adults with XLH and their family members. After completing this survey, you can choose whether you would like to continue with step two.
2. A confidential interview about your experiences, conducted over Zoom. Closed captioning will be available.
ABOUT the Research Team
Maya Doyle, MSW, PhD. Department of Social Work - School of Health Sciences
Miriam DiMaio, MSW, LGC, Frank H. Netter School of Medicine
XLH Advisory Panel: