The National ALS Registry is composed of national administrative data from the Centers for Medicare and Medicaid Services, Veterans Health Administration and Veterans Benefits Administration. In addition, a self-registration component was deployed in October 2010, which allows persons with ALS to self-register through a secure web portal. The purpose of these surveillance projects was to develop datasets of all ALS cases in specific states and metropolitan areas over a 3-year period. The final datasets are being used by the Agency for Toxic Substances and Disease Registry (ATSDR) to evaluate the completeness and methods of the National ALS Registry.
How We Helped:
McKing conducted ALS surveillance in three states and eight metropolitan areas. We conducted surveillance independently as well as by partnering with local and state-level organizations. The surveillance sites represent 27% of the total U.S. population with an intentional over-representation of minority populations. Surveillance sites were: Florida; New Jersey; Texas; Chicago; Detroit (Wayne County); Philadelphia (Philadelphia County); five counties in the Atlanta metropolitan area; Las Vegas (Clarke County); Los Angeles (Los Angeles County); five counties in the San Francisco area; and three counties and the City of Baltimore in the Baltimore metropolitan area. Participation of neurologists within the surveillance sites was a critical success factor. To that end, we developed communication materials such as brochures, conference exhibits and promotional items to inform neurologists in each surveillance area about the project and to encourage them to report ALS cases. Neurologists that treated or diagnosed ALS patients were asked to complete a brief abstraction form which includes information on demographics, date of diagnosis and El Escorial Criteria category classification for each patient. In addition, death data was reviewed to identify possible cases of ALS not reported to the surveillance project. When neurologists were identified, they were contacted and requested to complete abstraction forms. A more detailed Medical Records Verification form was completed for 16% of the reported cases and submitted with an EMG to McKing’s consulting neurologist for verification of diagnosis.
McKing identified 4,842 neurologists in the participating areas and determined only 1,576 (32.5%) would diagnose or care for persons with ALS. Of these, 929 diagnosed or cared for persons with ALS during the three-year project time period. A total of 7,062 case reports were received and of those 5,883 were identified as unique ALS cases. The final datasets were submitted to ATSDR and will be used to compare against the National ALS Registry dataset as part of its evaluation of the National Registry’s completeness. A summary for each project site was prepared and published on the ATSDR website. McKing and its partners developed manuscripts for publication in peer-reviewed journals to document project findings. Ten manuscripts (1, 2, 3, 4, 5, 6, 7, 8, 9, 10) have been published. McKing also has participated in poster presentation sessions at the Northeast ALS Consortium Annual Meeting, the International Symposium on ALS/MND, the Annual Meeting of the American Academy of Neurology, the Pennsylvania Neurological Society Annual Meeting, the Annual Meeting of the American Public Health Association, and the Council for State and Territorial Epidemiologist Annual Meeting, the Annual Meeting of the Association of American Geographers, and the Northeast Epidemiology Conference.