A comparison of knowledge, attitudes, and experiences of patients with inherited v. de novo forms of X-linked hypophosphatemia (XLH)
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.

Start Here

(NOTE: Survey should take approximately 20 minutes)

ABOUT the Research Team

Principal Investigators:
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:
Susan Faitos, LMFT, Executive Director, The XLH Network, Inc.  susan.faitos@xlhnetwork.org
Nikki Tourigny
Amber Hamilton
Lindsay Peifer
If you have any questions about the study or if you would prefer to complete the survey on paper, please email the principal investigators at XLHStudyQU@qu.edu