QU XLH Survey 2021-22

You are invited to take part in a research study to help us learn more about the experience of individuals with familial or spontaneous X-linked Hypophosphatemia (XLH). We want to know how patients and families understand the way XLH is inherited, how genetics services are used by the XLH community, and how the diagnosis of XLH affects quality of life.  The study is being led by Dr. Maya Doyle, who is a social worker and professor, and Miriam DiMaio, who is a genetic counselor and professor, at Quinnipiac University.

 

The study has two parts - the first is a confidential online survey, open to all adults with XLH and their family members. The second is the option to participate in an online interview, which will be scheduled at a convenient time for you.
 

The informed consent form will be found on the next page of this survey. You can also choose to not continue.

 

If other members of your family are adults with XLH, please encourage them to complete this survey themselves.

If you have any questions about the survey or interview, you are welcome to contact Dr. Doyle or Professor DiMaio at XLHStudyQU@qu.edu or by calling Dr. Doyle's office at 203-582-7844.