Sugar Creek, Missouri (a community of 4,000 located between Kansas City and Independence) is the site of a refinery that operated between 1904 and 1982. There is a long contentious history of community complaints, studies, lawsuits and media coverage focused on the refinery contamination. Anecdotal evidence has suggested that there is a higher than expected rate of multiple sclerosis among residents of Sugar Creek. A study to determine the true prevalence was funded by ATSDR in the fall of 2000. A committee, the Amoco Coordinating Group, formed by the city to open lines of communication to all of the stakeholders, has expressed support and interest in the study. Of particular note is the strong interest and willingness to assist from the citizens action committee called CLEANUP (Citizens Learning About Amoco, Negligence and Underground Pollution). Many cases of multiple sclerosis have already been self reportd to the health department and the ATSDR Regional office. The presentation will review and compare the case ascertainment efforts from sources that are primary (neurologists, death certificates) and secondary (local MS Chapter office, self reports, etc.) which are made possible by collaborative partnerships with the medical community and community groups. The close coordination of this study with two others (in Ohio and Texas)being conducted simultaneously will provide background MS prevalence estimates for three geographically and ethnically diverse areas. It will result in the development of study materials and methods to be used for case ascertainment and case verification in future studies.
Learning Objectives: At the conclusion, the participant in this session will be able to: 1. Understand methods used for case ascertainment and case verification of multiple sclerosis. 2. Recognize the value of community collaboration in an epidemiological study. 3. Recognize the importance and value of coordinating with other similar studies occurring simultaneously in different locations.
Keywords: Environmental Health Hazards, Community Collaboration
Presenting author's disclosure statement:
Organization/institution whose products or services will be discussed: None