African Americans experience disproportionate neurodegenerative changes in the medulla and upper cervical spinal cord in early multiple sclerosis

Moog, Tatum M.; McCreary, Morgan; Stanley, Thomas R.; Wilson, Andrew Gordon; Santoyo, Jose; Wright, Katy; Winkler, Mandy D.; Wang, Yeqi; Yu, Frank; Newton, Braeden D.; Zeydan, Burcu; Kantarci, Orhun H.; Guo, Xiaohu; Okuda, Darin T.

doi:10.1016/j.msard.2020.102429

Cited by 24 publications

(20 citation statements)

References 30 publications

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“…We propose that the future observational studies comparing outcomes across ethno-ancestries use 'Area Deprivation Index' (ADI), which can be derived from patient's address Another limitation is that we did not systematically collect data on diseasemodifying (DMT) and symptomatic therapies. In our prior work, we did not find differences in overall rates of DMT use across ethnic groups [27] and in a recent audit of NYU MS Center data, higher proportion of AA were receiving highefficacy therapies (natalizumab and anti-CD20 therapies) than Whites (data on file) likely in response to their higher disease severity. Thus, it is highly unlikely that observed differences in disease severity are due to under-treatment of minority populations.…”

Section: Discussionmentioning

confidence: 68%

“…African ancestry is a known risk factor for worse outcomes in MS. 21 , 22 African Americans have faster disease progression, 23 especially early in the disease, 24 and more brain, 25 , 26 spinal cord, 27 and optic nerve 28 atrophy. In line with these reports, we found that symptom scores were higher in AAs compared with Whites in every domain even after adjusting for age and sex.…”

Section: Discussionmentioning

confidence: 99%

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How Multiple Sclerosis Symptoms Vary by Age, Sex, and Race/Ethnicity

2021

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Background:Little is known about how symptom severity in the various neurologic domains commonly affected by MS vary by age, sex and race/ethnicity.Methods:This was a retrospective study of MS patients attending two tertiary centers in the NYC metropolitan area, who self-identified as White, African-American (AA), or Hispanic-American (HA). Disability was rated with Patient-determined Disability steps (PDDS) and symptom severity - with SymptoMScreen (SyMS), a validated battery for assessing symptoms in 12 domains. Analyses comparing race, sex, and age groups were carried out using ANOVA Models and Tukey’s HSD multiple comparison tests to control the overall Type I error. A multivariable model was constructed to predict good self-rated health (SRH) that included demographic variables, PDDS and SyMS domain scores.Results:Sample consisted of 2,622 MS patients (age 46.4 years; 73.6% female; 66.4% White, 21.7% AA, 11.9% HA). Men had higher adjusted PDDS than women (p=0.012), but similar total SyMS score. Women reported higher fatigue and anxiety scores (more botheration), while men had higher walking and dexterity scores. AA and HA had higher symptom domain scores than Whites in each of the 12 domains and worse SRH. In a multivariable logistic model, only pain, walking, depression, fatigue, and global disability (PDDS), but not sex or race/ethnicity predicted good SRH.Conclusions:AA and HA race/ethnicity was associated with higher overall disability, higher symptom severity in each of the 12 domains commonly affected by MS, and worse self-rated health relative to Whites. However, only symptom severity and disability, and not demographic variables, predicted good self-rated health.

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Section: Discussionmentioning

confidence: 68%

Section: Discussionmentioning

confidence: 99%

How Multiple Sclerosis Symptoms Vary by Age, Sex, and Race/Ethnicity

2021

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“…1,2 Furthermore, the natural history of disease in non-White people with MS (pMS) appears to differ from that of White pMS, with younger age at onset in Hispanic pMS [3][4][5] and more rapid progression of disease in pMS of African descent, as evidenced by higher lesion load and higher rates of brain and spinal cord atrophy in this population. [6][7][8] Hispanic pMS have also been shown to develop optic neuritis at higher rates and have lower normalized cortical volumes at time of diagnosis. 3,9,10 Structural and social determinants of health (SSDoH), which affect non-White populations disproportionately, are a central contributor to disparities in MS outcomes between non-White and White pMS.…”

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confidence: 99%

Enrollment of Non-White Participants and Reporting of Race and Ethnicity in Phase III Trials of Multiple Sclerosis DMTs

et al. 2022

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Background and objectives:Black and Hispanic people with MS (pMS) have been found to have different disease courses and/or worse outcomes associated with MS compared to White pMS. They are also more likely to be negatively impacted by social determinants of health, further worsening disparities in outcomes. As these disparities may affect treatment response, non-White pMS must be included in trials for greater generalizability of research and therefore, more inclusive treatment plans. In this study, we aimed to evaluate how representation of non-White groups in phase III trials of approved disease-modifying therapies (DMTs) has evolved over time and how race and ethnicity are reported in medical journals and on manufacturer websites.Methods:We conducted a systematic review of the PubMed database from 1995 to June 2020 to identify manufacturer-sponsored phase III trials for FDA-approved MS DMTs. We explored how race and ethnicity were reported in trial publications. Using studies where information was available, we analyzed the representation of non-White pMS over time and compared to multinational census data. Additionally, we reviewed patient- and healthcare provider (HCP)-facing websites of available DMTs to assess the dissemination of information on racial and ethnic representation in trials.Results:44 phase III trial publications were reviewed, representing 45 trials, among which 17 (37.8%) did not report race or ethnicity, 14 (31.1%) reported race and ethnicity as proportion of White participants only, and 14 (31.1%) reported two or more races/ethnicities. When compared to multinational census data, non-White pMS were significantly underrepresented in MS trials. Due to lack of data, trends in representation of other races and ethnicities could not be assessed. No patient- nor HCP-facing DMT websites reported data on race and ethnicity in pivotal trials. Study results are available on our study dashboard.Conclusion:Race and ethnicity are underreported in MS DMT trial publications, and race and ethnic representation are omitted from manufacturer websites. When available, data show that non-White pMS are significantly underrepresented in MS trials. The availability of this information is crucial for patients, together with their HCPs, to make informed decisions about their care.

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“…17,18 MRI and optical coherence tomography studies suggest that AAwMS experience neurodegeneration and loss of brain and retinal tissue that is different from and more rapid than their White counterparts. [19][20][21][22][23] AAwMS experience atrophy of gray matter (−0.9%/year vs −0.5%/year; p = 0.02), white matter (−0.7%/year vs −0.3%/year; p = 0.04), and nuclear thalamic tissue (−1.5%/year vs −0.7%/year; p = 0.02) at rates twice that of White patients of similar age and disease duration. Atrophy rates of retinal nerve fiber layer (−1.1% vs −0.8%; p = 0.02) and ganglion cell inner plexiform layer (0.7%/year vs −0.4%/year; p = 0.01) were faster in African American patients.…”

Section: Disparities In Clinical Outcomes and Healthcare Accessmentioning

confidence: 99%

Advancing Care and Outcomes for African American Patients With Multiple Sclerosis

et al. 2022

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Multiple sclerosis (MS) has historically been underdiagnosed and undertreated among African Americans. Recent evidence suggests that African Americans with MS have a different clinical presentation, increased disease incidence and burden, and worsened long-term outcomes versus their White counterparts. Due to limited data available for African Americans in MS clinical trials, it is difficult to make informed, generalizable conclusions about the natural history, prognosis, and therapeutic response in this population. In this narrative review, we highlight the nature and magnitude of the health disparities experienced by African Americans with MS and underscore the pressing need to increase knowledge about and understanding of MS disease manifestations in this group. Additionally, we describe the mission and objectives of the recently established National African Americans with Multiple Sclerosis Registry (NAAMSR), which is intended to be a platform to advance the care of African Americans with MS and address health disparities they may experience.

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African Americans experience disproportionate neurodegenerative changes in the medulla and upper cervical spinal cord in early multiple sclerosis

Cited by 24 publications

References 30 publications

How Multiple Sclerosis Symptoms Vary by Age, Sex, and Race/Ethnicity

How Multiple Sclerosis Symptoms Vary by Age, Sex, and Race/Ethnicity

Enrollment of Non-White Participants and Reporting of Race and Ethnicity in Phase III Trials of Multiple Sclerosis DMTs

Advancing Care and Outcomes for African American Patients With Multiple Sclerosis

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