The NBIA Research Group at OHSU is currently developing a new study called PLANready. The purpose of this study is to help us better understand the natural history of PLAN, meaning how symptoms appear and change over time. By studying individuals with PLAN, we also hope to identify disease markers that can be used in future clinical trials. A disease marker is any symptom or measurement that happens reliably in a disease, changes predictably with disease progression, and becomes “better” with successful treatment. A disease marker could be an MRI finding, a protein level in the blood, or a rating scale to measure symptoms or function. Natural history studies provide data that serve as the foundation for future drug trials. Please check back frequently to learn when enrollment for this new study will start—we will also do our best to notify the international PLAN community.