Study Status: Recruiting
Recruit Status: Recruiting
Study Type: Observational
Official Title: NBIAready: Online Collection of Natural History Patient-reported Outcome Measures
Brief Summary: The purpose of this study is to learn more about a subtype of Neurodegeneration with Brain Iron Accumulation (NBIA) called Pantothenate Kinase-Associated Neurodegeneration (PKAN) by (1) collecting information about how symptoms and findings in NBIA change over time and (2) identifying measures of NBIA that can be used in future clinical trials. Participants will logon to a secure website from home every 6 months for a period of 5 years to electronically complete a set of rating scales as related to their NBIA.