Improvement of Bilateral Ptosis on Higher Dose Enzyme Replacement Therapy in Pompe Disease

Abstract

To investigate institutional and individual practices and attitudes in clinical magnetoencephalography (MEG) in the United States.An MEG Center Director Survey (20 questions) and an MEG Center Doctoral-Level Staff Survey (6 questions) were e-mailed to all clinically active MEG centers in the United States (21) in 2008.Fifteen centers declared to be in operation an average of 7 years (range, 2 to 21 years), performing a total of 836 evoked field mappings, 842 epilepsy, and 1,222 research studies in 2006, and 866, 880, and 1384 such studies, respectively, in 2007. All sites claimed to use EEG in conjunction with MEG for epilepsy studies. The number of averages required for various evoked field modalities varied significantly among centers. In two centers MEG reports were signed by nonphysicians and in two other centers by nonneurologists. Epilepsy studies are reported within an average of 9.3 days (range, 1 to 30 days) and mapping studies within 4.1 days (range, 0.5 to 30 days). Thirty-two doctoral level survey participants (23 MDs and 9 PhDs) claimed an average of 9.6 years experience in MEG and average of 7.5 years in clinical MEG. More than five years experience in MEG was claimed by 18 participants, and more than 5 years experience in clinical MEG was claimed by 16. Eighty-eight percent of participants agreed that there was a lack of accepted clinical standards for MEG practice. Seventy-eight percent of neurologists and 75% of foreign medical graduates favored developing standards. Twenty-eight percent of participants and 100% of radiologists were not in favor of developing standards of MEG practice. Some form of certification for MEG practitioners was supported by 81% of participants.Existing disparities in the current practice of clinical MEG in the United States necessitate clinical practice guidelines.