Wednesday, August 3, 2016

Have you had joint replacement surgery?

A new research study at Quinnipiac University, led by our Scientific Advisory Board chair, Carolyn Macica, PhD, is looking into XLH patients' experience with joint replacement surgery. Please note that anyone currently in a clinical trial is NOT eligible for this study.

Here's the official description:

We 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.

Step 1: The first step is to determine if you qualify for the study. If you are a male or female aged 18 years or older diagnosed with XLH by a physician and you have had either a hip or knee replacement more than 6 months ago, you qualify to participate in this study. You may not be involved in any current clinical trials to participate in the study.

Step 2: Next, you will be asked to complete an online questionnaire about your joint replacement(s). It will take about 30 minutes to complete, so please make sure you have enough time to give thought to each of your answers. You will also be asked to sign a medical records release form and provide us with your orthopedic surgeons name and office number, so please make sure you have those available before starting the questionnaire. You will receive a $30 Starbucks gift card if you complete the survey.

Think you qualify? Click the link below to begin the survey:

Study HIC#: 6316
Principal Investigator:
Dr. Carolyn M. Macica
Contact Information:

DISCLAIMER: 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.

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