Wednesday, September 2, 2015

The patient's perspective on clinical trials

In light of the upcoming Phase 3 trials for KRN23, we've been talking to some XLHers who have participated in a variety of clinical trials in the past, so we can share a bit about the experience generally. These comments are not specific to the KRN23 trials, but are just meant to shed some light on an experience that most people are unfamiliar with.

Today's insights, the first in a series on this topic, are from a male in his fifties, who lives in the southeast.

1. How and why did you decide to participate in the trial?

I decided to participate in the trials due to my health concerns and those of my children. I wasn't sure if I could get any relief for my self but wanted to participate with the hope that it would benefit those who are younger and still have a lot of living to do. If I could help them relieve some of their issues thru the trials then I was all for it.

2. Was there anyone in particular who helped you decide whether to participate or to cope with any challenges? 

Family and a fellow XLHer.

3. What do you know now that you wish you'd known before participating in your first trial?

The trials I have participated in have been well explained and there really wasn't any hidden info or circumstances. So really nothing.

4. Anything else you want to share with the Network's members?

I know people have different varying conditions of hypophosphatemia and everyone will feel different on trial medications, but my thought on the whole trial study is if you or I could help the next generations with this disease then why shouldn't we? It may not help us now but our children, their children, and generations down the line may benefit from something we help accomplish.

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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