This follow-up study of a subgroup of the patients seen in a natural history study of
mucopolysaccharidosis type IIIA (Sanfilippo syndrome type A) addressed the adaptive and
medical characteristics of their advanced disease manifestations. Of the original 24 patients,
specific data was collected on only 58% primarily due to difficulty in locating families and
coordinating time for interviews two to four years after the original study. At the last contact
with the patient, age range was 8 to 24 years of age. Data were collected from telephone …