To assess for differences in the time from symptom onset to diagnosis of multiple sclerosis (MS) patients from various racial and ethnic groups

Clinical research can uncover and increase understanding around patterns of health care disparities. Diverse racial and ethnic representation in clinical research is also important to ensuring health equity. The NIH MS Natural History Protocol is a longitudinal observational study that evaluates patients with neuroinflammatory disorders while they remain under the care of an external primary neurologist. We sought to characterize the racial and ethnic composition of the cohort of patients enrolled in this study.

Cohort analysis of all patients in the NIH Multiple Sclerosis Natural History Protocol with confirmed diagnosis of MS. In this initial pilot analysis, the primary outcome measure was time from symptom onset to diagnosis based on history obtained from initial intake evaluation. Further analyses will restrict patients diagnosed with MS from 2010 onwards to control for changes to diagnostic criteria and evaluation.

Total cohort of 1279 patients, with preliminary data selected randomly from 20 patients with enrollment after 2005. Racial/ethnic breakdown: 8 non-Hispanic Black, 6 non-Hispanic White, 3 Hispanic, 2 non-Hispanic Asian, 1 multi-racial. Average time from symptom onset to diagnosis was 69.8 months in Black (SD 84.3, range 3-168), 18.2 months in White (SD 25.2, range 1-60), 19.7 months in Hispanic (SD 4.0, range 16-24), 21.5 months in Asian (SD 20.5, range 7-36), 1 month in multi-racial. Lack of insurance was noted in the clinician’s report to cause delay in diagnosis in 1 Asian and 1 Black patient. 

There is a growing body of literature that shows that underrepresented racial/ethnic minorities with MS experience a worse disease course. The reasons for this unequal burden of disease are not well understood, but inequities in diagnostic delay may play a role.