Thursday, February 2, 2017

Last chance: joint replacement survey

There's just a little over a week left until the online survey about XLHers' experiences with hip or knee replacement will close (Feb. 10th). If you've been meaning to do it, now's the time! And note that you CAN participate in this survey even if you're in a clinical trial.
Here's the link:
The survey consists of an online questionnaire for men and women aged 18 or older with X-linked hypophosphatemia (XLH) who have had a hip or knee replacement. Compensation is offered by way of a Starbucks gift card. 
The researchers have already received some good information that will help to educate clinicians about joint replacements for XLHers, but with just a few more, they'll reach their participation goal and maximize the usefulness of their data.
As always, we encourage you to do your due diligence before participating in a research study. The XLH Network, Inc. does not endorse or critique specific clinical trials, and does not counsel individual patients either for or against participation in any specific clinical trial. Prospective volunteers should always carefully review the clinical trial's informed consent documentation, and discuss the pros and cons of their participation with trusted advisers, including their health care providers and family members. For more information on research participation, check out

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