There are two aspects to this study: looking back on past records (retrospective) and in person assessments moving forward (prospective).
All patients would enroll and be assigned to a clinical site. Prior to enrollment, families will be asked to review and sign an appropriate consent form. The family will be asked to provide all available medical records to the clinical site in advance of the first visit. This allows the study doctor time to become familiar with the medical history. The clinical site will then call and schedule a visit. The actual visit schedule depends on the age of your child.
From the review of retrospective records, Aspa is offering a free medical record retrieval service to help families obtain past records. Aspa and the study doctors can learn what past doctors and other healthcare providers observed based on evaluation of your child. Assessments fall into the following categories: neurological, motor function, blood work to evaluate the effects of the disease and a review of any other medical information related to what your child is currently experiencing.