We describe a coordinated effort to identify the core features of a parent-controlled personal health record for children with special health care needs, involving parents, care givers, and healthcare providers. A summary of the core features is presented, emphasizing needs that are not commonly recognized as functions of a generic personal health record. Our goal was to identify requirements for personal records that empower parents to effectively obtain, organize, understand, and communicate the information necessary to help their children receive the best possible care.