Friday, May 13, 2016

Infant KRN23 clinical trials

A trial of KRN23 in infants/toddlers (age 1 to less than 5 years old) is recruiting patients now.

You can read more about it, and get the current contact information here:

https://clinicaltrials.gov/ct2/show/NCT02750618?term=xlh&rank=12

At present, the only site is at Yale (New Haven, CT), but we expect there to be additional sites within the United States (not worldwide).

For those with older children interested in a clinical trial, we expect there to be a trial for children age 5 to 12 later in the year, and we'll post the information as soon as it's official and open for recruitment.

If you're considering participation in a trial, please remember that discussion of the details of others' experiences (especially with respect to symptoms and side effects) may have some adverse consequences for the validity of the study. On the other hand, discussions of things like the time commitments, disruptions to daily life and the quality of the staff are safer to discuss with other participants in the trial.

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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