At the 2015 NBIA Disorders family conference, Dr. Hayflick, Dr. Hogarth and genetic counselor Allison Gregory emphasized the importance of collecting natural history data in order to get the NBIA community ready for any drug trials that may be coming down the pipeline. We are working hard to make this goal a reality!
These five-year clinical studies will help us better understand the natural history of PKAN and PLAN (how symptoms appear and change over time) and hopefully identify disease markers that can be used in future clinical trials. Click on the logos below to learn more!
We will soon expand to the other NBIA disorders as well. Once the other studies are launched, we will make an announcement on our Twitter and Facebook. If you prefer to be notified by email, please register with our site so we can contact you once future studies become available.