Here's the gist of the project: "We [the researchers] are seeking men and women aged 18 or older with X-linked hypophosphatemia (XLH) who have had a hip or knee replacement to participate in an online questionnaire in exchange for a Starbucks gift card. The purpose of this questionnaire is to learn more about joint replacements in patients with XLH. With the information gathered, we will be able to educate clinicians about joint replacements in patients with XLH."
The researchers have had some response, but could use some more, and have expanded the criteria for eligibility, so that patients previously ineligible may now be eligible. In particular, those who are in clinical trials now are eligible. Accordingly, if you didn't do the survey before and you're interested in sharing your joint-replacement experiences with researchers now, here's the official announcement (and make sure to read the full announcement in the link below):
We are currently accepting new submissions from patients who are either enrolled, or not, in a clinical trial! If you were previously excluded because of your involvement in a clinical trial and you are interested in participating in this very important assessment of pain and joint health, please complete the survey using the updated link below.
Additionally, if you have attempted the survey previously but have not completed it, you can restart the survey using the same link below.
If you could not take the survey because you had a joint replacement within 6 months, please take the survey as soon as you pass the 6-month mark.
Thank you for your participation!
Contact: XLHPainStudy@Quinnipiac.edu or (203) 582-4053
*If you have already successfully completed the survey, there is no need to resubmit your response.
NOTE: As always, the XLH Network, Inc. does not endorse or critique specific research, and does not counsel individual patients either for or against participation in any specific research study. Prospective volunteers should always carefully review the research study's documentation, and discuss the pros and cons of their participation with trusted advisers, including their health care providers and family members.