If you're interested in participating, please contact Adelphi Values, the research company contracted by Ultragenyx to do the interviews. You can reach Holly Spencer at holly.spencer@adelphivalues.
com or 617-720-0001. Participants will be compensated for time and/or travel. More details are in the official flyer from Ultragenyx below.
Eventually, the Network's Natural History Study (launching in 2017) will collect answers to a broad range of questions about experiences with phosphate-wasting disorders, so future research won't have to start from scratch. That will take time, though, and some answers are needed about the patient experience in the very short term, while the application for KRN23 approval undergoes review by the FDA and comparable governmental agencies throughout the world. Much of this information is related to whether or not the original goals for clinical trials were correctly targeted, and the only way to determine that is to ask further questions of patients.
As always, 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.