PKANready Launches!

Those of you who attended this year’s NBIA Disorders family conference may recall Dr. Hayflick, Dr. Hogarth and Allison emphasizing how important it is to collect natural history data in order to get the NBIA community ready for any drug trials that may be coming down the pipeline. We are now taking the first step to making that goal a reality and are proud to launch PKANready! This is a five-year clinical study that will help us better understand the natural history of PKAN (how symptoms appear and change over time) and hopefully identify disease markers that can be used in future clinical trials. We will be starting with the PKAN community but this study will soon expand to the other NBIA disorders as well.

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