236836 Determining the Feasibility of a National Amyotrophic Lateral Sclerosis Registry through Four Pilot Projects

Monday, October 31, 2011: 12:50 PM

Kevin Horton, DrPH, MSPH , Division of Health Studies, ATSDR, Atlanta, GA
Oleg Muravov, MD, PhD , Surveillance and Registries Branch, Agency for Toxic Substances and Disease Registry, Atlanta, GA
Marchelle Sanchez, MS , Division of Health Studies, Agency for Toxic Substances and Disease Registry, Atlanta, GA
Vinicius Antao, MD, MSc, PhD , Division of Health Studies, Surveillance and Registries Branch, Agency for Toxic Substances and Disease Registry, Atlanta, GA
Wendy Kaye, Senior Epidemiologist , Surveillance and Registries Branch, Agency for Toxic Substances and Disease Registry, Atlanta, GA
Amyotrophic Lateral Sclerosis (ALS) is a progressive and often fatal disease of the upper and lower motor neurons. Most people die within 25 years of being diagnosed with ALS. In 2008, the President signed into law the ALS Registry Act, allowing the Agency for Toxic Substances and Disease Registry (ATSDR) to create a national ALS registry to better describe the incidence, prevalence, and potential risk factors of ALS. While the National ALS Registry was officially launched in October, 2010, four pilot projects were conducted prior to the launch to determine the feasibility of various methods to capture ALS cases. The four pilot sites utilized national administrative databases (i.e., Medicare, Medicaid, Veterans Health Administration and Veterans Benefits Administration) as well as local databases. In the national and local databases, 24,014 individuals were identified as having a motor neuron disease (MND) ICD-9 code. Of those individuals, approximately 4,700 medical records were reviewed. An algorithm was developed based on the medical records reviewed to identify ALS cases in the national databases. The algorithm had sensitivity and specificity of 85%. Based on these results, it was determined that it is feasible to create a national ALS registry using national administrative databases. However, the pilot effort also indicated that not all individuals with ALS were in one or more of the national databases. Therefore, ATSDR created an additional secure online portal to gather information about risk factors of ALS not available in the national databases in addition to being able to capture those not in the national databases.

Learning Areas:
Epidemiology
Public health or related laws, regulations, standards, or guidelines

Learning Objectives:
1) Explain how records from pilot projects were used to determine the feasibility of a National ALS Registry. 2) Describe the methods used for enrolling patients in the National ALS Registry.

Keywords: Registry, Disease Data

Presenting author's disclosure statement:

Not Answered