Multiple sclerosis in a multi-ethnic population from Northern California: a retrospective analysis, 2010–2016

Romanelli, Robert J.; Huang, Qiwen; Lacy, Joseph R.; Hashemi, Lobat; Wong, Alana T.; Smith, Alden

doi:10.1186/s12883-020-01749-6

Cited by 25 publications

(24 citation statements)

References 17 publications

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“…We found that Non-AJ MS patients differed from their Ashkenazi counterparts in several demographic characteristics. The ratio between females and males in the AJ group was 2.7:1, similar to reports in European countries 30 , 31 , while Non-AJ patients had a ratio of 1.6:1, smaller than that of any ethnic population recently studied 32 . Non-Ashkenazi patients in our sample were younger at the time of EDSS evaluation and at disease onset compared to Ashkenazi patients, these differences in age remained consistent when analyzing Israeli natives separately and thus cannot be attributed to immigration effect.…”

Section: Discussionsupporting

confidence: 87%

Differences in MS clinical and epidemiological characteristics between Ashkenazi and non-Ashkenazi Jewish patients in Israel: a retrospective single center study

Karni

Noon

Shiner

et al. 2022

Sci Rep

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The prevalence and severity of Multiple Sclerosis (MS) varies across different ethnicities, with a tendency to a more severe phenotype in non-Caucasian populations. Our objective was to evaluate the differences in disease phenotype between Ashkenazi Jewish and Non-Ashkenazi Jewish patients in Israel. We conducted a single center retrospective cohort study in which subjects were assigned to Ashkenazi or Non-Ashkenazi groups according to self-reported ancestry and disease severity was assessed using the expanded disability status (EDSS), MS severity score (MSSS), progression index (PI) and MRI metrics. 330 Ashkenazi Jewish (AJ) and 207 Non-Ashkenazi Jewish patients (Non-AJ) were included. Non-AJ had a younger age of disease onset (32.7 years vs. 35.7 years, p = 0.05), with a lower proportion of females (62.3% vs. 73.3%, p = 0.01). These differences were maintained within the subgroup of Israeli native patients. Ethnicity was a significant predictor of MSSS (β = 0.601, p = 0.003), with a higher estimate than that of other epidemiological factors. To conclude, Non-AJ patients had an earlier age of onset and a more disabling disease as well as having a more balanced female to male ratio compared to AJ patients. These findings demonstrate variability of disease phenotype within Caucasian patient's dependent on their ethnicity despite equivalent access to healthcare services.

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Section: Discussionsupporting

confidence: 87%

Differences in MS clinical and epidemiological characteristics between Ashkenazi and non-Ashkenazi Jewish patients in Israel: a retrospective single center study

Karni

Noon

Shiner

et al. 2022

Sci Rep

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“… 27 BIPOC patients also face worse MS outcomes, and potentially even increasing incidence. 28 , 29 As sharply illustrated when examining disparities in clinical outcomes related to the COVID-19 pandemic in the general population, these disparities are linked to differences in access, SES and discrimination. Outside of the United States as well, studies have linked low SES and minority racial group status with increased risk of MS-related disability.…”

Section: Discussionmentioning

confidence: 99%

Expanded access to multiple sclerosis teleneurology care following the COVID-19 pandemic

McGinley¹,

Gales

Rowles

et al. 2021

Multiple Sclerosis Journal - Experimental, Translational and Cl

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Background Teleneurology for multiple sclerosis (MS) care was considered feasible, but utilization was limited. Objective To describe how the existing teleneurology populations at two academic MS Centers changed during the COVID-19 pandemic. Methods In this cross-sectional study, we captured all in-person and teleneurology visits at two academic MS Centers between January 2019 and April 2020. We compared group differences between the Centers, and COVID-related changes using T-, chi-squared Kruskal-Wallis and Fisher exact tests. Results 2268 patients completed 2579 teleneurology visits (mean age 48.3 ± 13.3 years, 72.9% female). Pre-COVID, the Centers’ teleneurology populations were similar for age, sex, MS type, and disability level (all p > 0.1), but differed for race (96.5% vs 80.7% white, p ≤ 0.001), MS treatment (49.1% vs 32.1% infusible, p ≤ 0.001), and median distance from Center (72 vs 186 miles, p ≤ 0.001). Post-COVID, both Centers’ teleneurology populations had more black (12.7% vs 4.37%, p ≤ 0.001) and local (median 34.5 vs 102 miles, p ≤ 0.001) patients. Conclusion Teleneurology visits in 2019 reflected the organizational and local teleneurology reimbursement patterns of our Centers. Our post-COVID-19 changes illustrate the potential for payors and policy to change disparities in access to, or utilization of, remote care. Patients’ perception of care quality and value following this shift warrants study.

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“…First among the reasons for enrollment targets, there is evidence that MS may differ in both risk factors and disease severity in certain racial and ethnic groups. People who identify as African American, LatinX, Middle Eastern, and North African are reported to have increased disease activity, more lasting disability, and/or worse clinical outcomes (8)(9)(10)(11)(12)(13). Other characteristics relevant to MS including early life exposures or vitamin D levels may differ (14).…”

Section: For Againstmentioning

confidence: 99%

Is It Time for Quotas to Achieve Racial and Ethnic Representation in Multiple Sclerosis Trials?

Mateen

2021

Front. Neurol.

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Clinical trials form the bedrock of evidence upon which clinical decision making is based. In multiple sclerosis (MS), the number of disease modifying therapies (DMTs) continues to expand with the number of clinical trials growing rapidly, especially over the past two decades. Phase III trials of DMTs are usually multi-centered, spanning many countries, and involve dozens of centers and hundreds of investigators. Meanwhile, efforts to improve racial and ethnic diversity in clinical trials in general in the United States have largely failed (1, 2). Just 5% of trial participants are African American or Black in the USA (compared to 13% of the population in the last reported U.S. census) and just 1% are Hispanic/LatinX (compared to 18% of the U.S. population) (2). Clinical trials for people living with MS are no exception to this reality (3,4).Current efforts to advance health equity via phase III clinical trials in MS appear inadequate. MS research is highly sensitive to the many structural inequities experienced across the U.S.A. Although clinical trials in MS have often been considered separate from broader social, cultural, and political trends, demands for equity in all aspects of American society are rightly becoming a tour de force. Many stakeholders are beginning to re-examine who enters and leads clinical trials. Increasing scrutiny of the representativeness of people of color is therefore rightly gathering new attention by patients, investigators, and the general public as the science of MS rapidly advances.Quotas, or enrollment number targets, are one approach that may be taken to increase the number of people of color in MS clinical trials. This practice has recent precedents. Taking a sense of responsibility for racial and ethnic representativeness to a new level, one recent trial of a vaccine for SARS-CoV-2 by a U.S.-based company set targets for the enrollment of participants from specific racial and ethnic groups in the U.S. and slowed enrollment to ensure adequate representation. Others have followed this trend by publicly delaying completion of enrollment in their trial until benchmarks for representativeness are met (5, 6). These benchmarks approximate the incidence of the disease in the target population for the proposed product and recognize concentrated epidemics within epidemics. In other sectors, most prominently including corporate America, the role of target numbers or quotas for the inclusion of people of color and women on executive boards has become a matter of not only public trust and confidence, but also enforced regulation. In 2020, California bill AB 979 was passed to eliminate all-White boards of publicly traded companies headquartered in that state (7). Accountability by major companies to achieve representativeness is considered a public good and sets a new standard which clinical trials can learn from.There are reasons for and against concrete numerical enrollment targets to ensure representativeness of people of color in MS clinical trials (Table 1).

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Multiple sclerosis in a multi-ethnic population from Northern California: a retrospective analysis, 2010–2016

Cited by 25 publications

References 17 publications

Differences in MS clinical and epidemiological characteristics between Ashkenazi and non-Ashkenazi Jewish patients in Israel: a retrospective single center study

Differences in MS clinical and epidemiological characteristics between Ashkenazi and non-Ashkenazi Jewish patients in Israel: a retrospective single center study

Expanded access to multiple sclerosis teleneurology care following the COVID-19 pandemic

Is It Time for Quotas to Achieve Racial and Ethnic Representation in Multiple Sclerosis Trials?

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