Characteristics of the 15-Year Longitudinal MS Patient Registry of the New York State MS Consortium

Background: The New York State Multiple Sclerosis Consortium (NYSMSC), an alliance of MS Care Centers across the state, was founded in 1996 to develop a long-term clinical database and advance collaborative and multidisciplinary research in MS. A profile of the registry was published in 1999 (n=3,109). In 2009 (Kister, et al) published findings of a significant trend in lower MS Severity Scores over ten years coinciding with an increase relapsing-remitting disease type at enrollment, decrease of EDSS at enrollment and increase of disease modifying therapy (DMT) use. 

Objectives: With inclusion of data through June 2013, we aimed to differentiate data between a cohort profile published in 1999 of the NYSMSC and profile of the current registry.

Methods: Data of 9,261 subjects with MS was analyzed. Proportions and means were calculated to characterize the sample and independent sample t-tests and chi-square tests were performed to investigate cohort differences.

Results: As of June 2013, females comprised 74.3% of the NYSMSC sample. Caucasians made up 92.3% of the registry with 6.2% African-American subjects. The mean age at enrollment was 43.8 (SD 11.3) and mean age of symptom onset was 32.7 (SD 9.9), while the mean age at diagnosis was 36.9 (SD 10.3). Mean disease duration from symptom onset to most recent follow-up was 15.7 (SD 10.1) years.  In comparison between the two time cohorts no significant difference was found in the sex ratio. The biggest differences were found in MS type, before 1999, 44.7% of subjects had a progressive disease type vs. 25.5% in later years (p<.001). Subjects who registered before 1999 had higher EDSS scores at study enrollment with mean 4.1 (2.4) vs. 3.2, (2.1) (p<.001).The proportion of DMT use increased as expected (45.0% vs. 65.6%) while maintaining a sample of DMT naïve patients.  Data from a specific incidence-cohort of patients with baseline data collected within five years of symptom onset in addition to standard demographic, patient perceived physical and psychosocial function, and clinical measurements also includes environmental and genetic blood material, MRI markers, visual measures and neurocognitive function at baseline, six and twelve-month follow-ups, had a mean age of onset of 38.9 (10.9) years and mean age at diagnosis of 40.3 (11.2).

Conclusions: Longitudinal registries are important to provide real-world data of patient experience, clinical care, therapy patterns and long-term outcomes in contrast to the controlled environment of the clinical trials.