Using Mortality Data As A Component Of Amyotrophic Lateral Sclerosis (ALS) Surveillance in New Jersey (NJ) (P2.073)

OBJECTIVES:To describe how mortality data were obtained, used to procure case reports, and searched for cause of death to improve estimates of incidence, point prevalence, and survival. BACKGROUND:The Agency for Toxic Substances and Disease Registry established surveillance projects to evaluate the completeness of the National ALS Registry and to describe incidence, prevalence, and demographic characteristics of ALS. The projects’ protocol included using mortality data to meet these goals. DESIGN/METHODS:Neurologists submitted case reports for NJ residents with ALS under their care from January 1, 2009 through December 31, 2011. NJ mortality data were queried for the period 2009-2011 using the ICD-10 G12.2 code for motor neuron disease (MND) and key terms; these data were used to collect additional case reports during follow-up and searched to determine cause and date of death among all cases. RESULTS:Of 519 identified death certificates, 83.4% (433/519) listed ALS and 16.6% (86/519) listed other MNDs as a cause of death. Of 433, 51.7% (224/433) matched to cases reported by neurologists, 14.1% (61/433) were captured during follow-up, and 34.2% (148/433) were not reported. Of 764 reported cases, 8.0% (61/764) were captured due to follow-up. Forty-three percent (327/764) of cases prevalent in the period 2009-2011 died in that interval; 87.2% (285/327) from ALS and 12.8% (42/327) from a cause other than ALS. Incidence, point prevalence, and survival of persons with ALS are presented. CONCLUSIONS:Mortality data can be used to identify ALS cases, but should not be used as the only mechanism for case identification. We were unable to determine if unreported decedents were actual ALS cases. Several cases died of causes other than ALS. Using mortality data yielded an additional 8.0% of cases. Successfully utilizing mortality data allowed for more accurate calculations of incidence, point prevalence, survival and other characteristics of the cohort. STUDY SUPPORTED BY: McKing Consulting Corporation through a contract funded by the Agency for Toxic Substances and Disease Registry (Contract # GS00F0042P). Disclosure: Ms. Jordan has received personal compensation for activities with McKing Consulting Corp. as an employee. Dr. Fagliano has nothing to disclose. Dr. Lefkowitz has nothing to disclose. Ms. Rechtman has received personal compensation for activities with McKing Consulting Corp. as an employee. Dr. Kayehas received personal compensation for activities with McKing Consulting Corporation as an employee.