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BACKGROUND: The Agency for Toxic Substances and Disease Registry (ATSDR) maintains the National ALS Registry, which identifies ALS cases using national administrative datasets and patient self-registration through a web portal. This non-traditional case ascertainment requires validation against more conventional surveillance techniques; therefore, ATSDR established surveillance projects in three states and eight metropolitan areas. The primary objectives were to: (1) obtain reliable and timely information on the incidence and prevalence of ALS in NJ: (2) better describe the demographic characteristics of NJ ALS cases: and (3) assist ATSDR in evaluating the completeness of the Registry.
METHODS: Neurologists practicing in the multi-state region were contacted to determine if they diagnosed or treated ALS patients and were asked to submit one-page case reporting forms for NJ residents with ALS under their care from January 1, 2009, through December 31, 2011. A medical record verification form and a copy of an EMG report were requested for a sample of cases. Death and hospital data were reviewed for quality assurance purposes and to identify additional cases. Compensation was offered for each form. No patients were contacted.
RESULTS: Of 679 providers contacted in New Jersey’s coverage region, 168 (24.7%) diagnosed or treated ALS patients and 152 (22.4%) reported cases. All major referral centers in the region participated. Targeted phone calls, faxes immediately followed by phone calls, and on-site visits appeared to increase participation. A total of 965 case reports were submitted. After de-duplication, 766 unique cases were retained in the final dataset. The annual incidence rates for 2009, 2010 and 2011 were 1.77, 1.98 and 1.84 per 100,000 persons, respectively. Rates were higher among males, whites, and those aged 60-79 years. Two-thirds of cases experienced symptoms up to 1.5 years prior to being diagnosed. For cases that were matched with a death certificate (n=295), 73% died within two years of diagnosis.
CONCLUSIONS: Approximately 75% of NJ neurologists do not diagnose or treat for persons with ALS. More than 90% of neurologists who diagnosed or treated ALS patients reported cases. Our findings are similar to previously reported ALS prevalence studies, suggesting that case ascertainment activities yielded a high proportion of possible cases. The project uncovered lessons regarding physician recruitment that may prove helpful in replicating similar surveillance efforts. Conducting time-limited, state-based, active surveillance for a non-reportable chronic condition is challenging; but with proper planning, adhering to data collection methodologies, providing compensation, and executing quality assurance procedures, project objectives can be met.