Thursday, May 12, 2016

On participation in clinical trials

If you don't already know about the clinical trials of KRN23, there are two Phase 3 trials going on now for adults, and we expect that there will be a Phase 3 pediatric trial beginning sometime this year. Check back for updates here, or in our discussion platform, or at our official facebook page:

You can read more about the current adult trials here:
and here:

Scroll down to the link to "show study locations" for contact information.

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.

If you're wondering about the experience of a clinicial trial generally, however, we have some insight to share from an XLHer who has participated in clinical trials in the past. He is a male college professor and in his fifties now.

In response to a question about why he enrolled in a clinical trial, he stated he had several reasons, including intellectual curiosity. He added, "As a middle-aged XLHer, any treatment is probably too late for me, but perhaps I can make some type of contribution to 'pay it forward' for future generations that include my two sweet daughters."

He also found the experience educational. He reported, "During the intake process I had the opportunity to meet another XLHer who was being discharged. This individual, a male who was about 30 years younger than me, was unable to walk. We chatted, somewhat awkwardly because of the variance in the extent of our shared illness. It was evident to both of us that his health was visibly and significantly more profoundly affected by XLH than mine. I almost started feeling like an imposter despite the fact that I have had 8 osteotomies. The fact remained: I was standing upright and he was bedridden when not in a wheelchair. It was then that I truly understood the range in the severity of XLH."

This particular member was also in a unique position to be able to use his experience as a teaching moment to educate others: "The best part of my participation in the research trial involved my teaching an online summer graduate research methods class. The students and I 'met' online via conferencing technology. When we began the chapter on Experimental Research, which happened to fall during the time when I was in the hospital for the clinical trial, I had an idea for providing the most authentic learning experience. During our online class discussion, I turned on the web camera and allowed the students to see me, the lab rat, sitting in a hospital bed. I wish I could have seen all 25 of the reactions to this stark reality and authenticity resulting from the true visualization of Experimental Research in action. Several of the students did use the chat window to type things like, 'Wow!' 'Incredible,' and 'You are very dedicated to what you teach!' Two months later I received the highest course evaluations I had ever received in the 5 years I have been teaching research methods."

The only challenges this member experienced were those involved with travel planning, but he reports that the staff who made the arrangements were very helpful.

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