Case-Finding for MS Prevalence Studies in Small Communities Requires a Community-Based Approach

In response to citizen concerns in 5 small Illinois towns, community-based case-finding determined the prevalence of multiple sclerosis (MS). Potential cases were identified through town meetings, publicity, advocacy groups and local volunteer outreach coordinators. Estimated prevalence based on available medical records for self-identifying individuals for 3 of the 5 communities was high (218-231 per 100,000 population) compared to other studies. Scanning databases in medical offices used in many other studies may miss MS cases; yet tracking medical records is labor-intensive and sometimes restricted by privacy guidelines. MS registries could improve case-finding accuracy and efficiency.