Plus Minus Chat Login Arrow right Chevron left Chevron right Close Close circle Lock Apple Windows Compare Arrow Up Right Book Lightning Flag Arrow Right Chart Bar Wavy Circle Check Cube Envelope Graduation Cap Info Link List Numbers List Pencil Line Star Table Profile Youtube Twitter Facebook LinkedIn Google Plus Box Speech Bubble Television Icon Arrow Circle Right Search Lightbulb Link Out Select Arrows Apple Podcasts Spotify Google Podcasts Amazon Music

Embracing diversity in MS clinical care and research

min read

Every patient carries a unique personal story. Every story is a multifaceted tapestry formed by weaving threads. The richness of these narratives integrates individual characteristics – sex, gender, sexual orientation, race, ethnicity, age – and structural aspects – social support and access to healthcare [1]. Therefore, not only are personal storylines diverse, but they can be unequal, leading to disparate impacts on health outcomes.

Natalie Busari has her own story to tell. She is a Black woman living with multiple sclerosis (MS) for 7 years. Today she defines herself as an “MS warrior”, and like all warriors, her journey has not been easy. Recently she told us, “When I was not coping well with my diagnosis, I ran away from where I live and from my neurologist. In a weird way, I was trying to run away from myself. When I came back, my neurologist just embraced me and said, ‘I would like to talk to you about a new treatment option. Can we discuss it together?’, and since then she has always been very supportive. That is the most important thing. Many Black people do not have that.”

Natalie has founded a non-profit patient organisation called The Nerve of My Multiple Sclerosis. “I just do not want anybody to feel scared about a diagnosis of MS. This is the main reason behind this organisation. We need representation, a space to talk, the opportunity to listen to what is going on. We need to participate. Lots of Black people with MS feel alone and need support. We are trying to advocate that,” she said. These reflections encapsulate in a nutshell some of the current challenges in clinical care and research.

Social and economic conditions can influence living with MS

The introduction to the conference proceedings of the first ECTRIMS Congress – held in 1985 – defined multiple sclerosis as “a unique disease with a tremendous impact on social life in countries with moderate climates” [2, p. XI]. Today, 40 years after, the Atlas of MS shows that, although being more present in the European and North American regions, MS is found in all countries of the world. However, access to disease-modifying therapies (DMTs) is not universal. In 25% of countries worldwide high efficacy approved DMTs are not used. Moreover, worldwide barriers in 83% of the countries hinder early diagnosis [3]. During our recent webinar Professor Deanna Rae Saylor of Johns Hopkins University School of Medicine, said that, for instance, in Zambia only 12 neurologists are supposed to serve almost 20 million people.

Importantly, the prevalence of MS varies not only among individuals of different sexes – with a 3:1 ratio of females to males – but also among different races, and ethnicities [4, 5]. A retrospective cohort study of 3,863 patients with MS from Kaiser Permanent Southern California contributes to disprove the false belief that MS is rare in Black Americans. MS prevalence was highest among Black and White individuals, and significantly lower among Hispanic and Asian/Pacific Islander persons [6]. Consistent with these findings, another retrospective analysis – involving more than 3,000 persons with MS – showed the highest prevalence of MS among Non-Hispanic Black women, and the lowest among Non-Hispanic Asian men [7].

The burden of MS differs not only by gender, but also by ethnicity. RJ Romanelli and coauthors reported that less common, earlier progressive forms of MS were more often found in Non-Hispanic Black individuals than in groups belonging to another race/ethnicity [7]. A review of 101 studies suggests that Black, Hispanic, and Middle Eastern and North African, but not Asian people with MS accrue physical disability at a faster rate than White people with MS [4]. Furthermore, Hispanic and Latinx individuals with MS may suffer from worse clinical outcomes compared to White people [1].

A growing body of literature, particularly in the United States, suggests that disparities in health outcomes may reflect various roots, such as systemic racism and socioeconomic disadvantage [8]. Social and economic factors enormously vary across population, including education, food security, neighbourhood, and healthcare access [9]. Among people with MS, all these factors and demographic characteristics – sex, gender, race, ethnicity – can influence health outcomes [9].

For example, MP McGinley and co-authors explored disparities in geographic access to MS centres in the U.S. The 185 MS centres of the United States are mostly located in metropolitan areas. Traveling to these centers may pose a real challenge for people with MS and disabilities who live in rural areas. This is likely to result in physical and financial constraints for a vulnerable population seeking specialised healthcare [10]. A retrospective cohort study focused on the experience of 1,795 patients – 175 Black/African Americans and 1,620 White Americans – with relapsing remitting MS (RRMS), who visited a tertiary MS referral centre in the U.S. between 2008 and 2015. On average, Black/African American individuals with RRMS took 10.5% longer to walk the Timed 25-Foot Walk (T25-FW) – a task measuring walking ability – compared to White American patients. Interestingly, a substantial proportion of this difference – 1/3 – was explained by higher body mass index, a greater burden of hypertension, and lower-income neighbourhoods [11]. Furthermore, a low socioeconomic status (income of less than US$15,000) is associated with a higher risk of comorbidities – such as hypercholesterolemia, hypertension, and arthritis [12], and can make it difficult to access appropriate healthcare [13]. The most deprived individuals with MS have a 61% higher mortality risk compared to the least deprived [13].

A broad perspective on the person is necessary when treating MS. Otherwise, important aspects that ultimately influence disease outcomes may be neglected [1]. Professor Ruth Dobson, based at the Centre for Preventive Neurology, Queen Mary University of London, told us in a recent interview, “We have a responsibility to address the societal context of people with MS. We live in a very inequal world, a world where some people do struggle hugely. These difficulties need to be investigated and considered in the healthcare system. We can also use screening questions when needed. A part of the challenge lies in normalising this kind of conversations and getting them started. Patients may then start to feel that they can talk about their challenges with health providers and be listened to. What is really important is listening to our patients and learning from them.”

Advancing inclusivity in MS research

Currently, some populations are underrepresented in clinical trials [9]. The U.S. Food and Drug administration (FDA) recommends enhancing diversity in clinical research. People enrolled in clinical trials should reflect those who use the drug in real-world once the drug is approved. This is essential to assess the impact of a wide range of characteristics on the safety and efficacy of a treatment [14].

A recent review analysed 243 studies on MS rehabilitation trials over the past 20 years and found that the cohorts used were restricted and participants’ characteristics were not thoroughly described. Age and sex were almost always reported, but other important aspects that might support decision-making in real-world were missing [15]. Professor Dobson told us, “MS is influenced by the conditions in which people are born, grow, live, work and age – the social determinants of health. People themselves recognise the impact of these conditions on their disease. Therefore, we need to explore the social determinants in the same scientific way we use for other environmental influences. We have to develop research with people with MS, not only about them.”

Patient and public involvement (PPI) means engaging patients and caregivers in all the stages of a clinical trial, starting from its conception and design [16]. The case study OCTOPUS (Optimal Clinical Trials Platform for Progressive MS) shows that people affected by MS can be very effective co-investigators. The study initially involved six people living with or affected by MS – family members or caregivers – who provided valuable insights on how to facilitate patients’ engagement with research. They suggested, for instance, to place recruitment hubs broadly across the United Kingdom, and discussed how to best communicate the advantages of enrolling in clinical trials [16]. Indeed, minority groups may hesitate to participate in clinical trials due to mistrust or fear of receiving poor-quality medical care [17]. Nonetheless, they are, in principle, interested in participating in research studies and learning about research opportunities from reliable sources – their health providers and MS organisations [17].

In some circumstances, taking part in trials can be burdensome. Therefore, the diversity of participants can be ensured also by removing the financial and logistic barriers that may discourage participation. The CHIMES trial is a phase-IV clinical trial study, which aims to investigate the efficacy and safety of ocrelizumab in Black and Hispanic people with MS, sponsored by Genentech [9, 18]. It was developed in collaboration with patients and national advocacy groups who worked together to remove the barriers that may hinder Black and Hispanic patients’ participation. To start with, the study website and the written material were made available in both English and Spanish. A panel of patients ensured that the documents were comprehensible and culturally appropriate. Furthermore, loss of earnings was compensated, travel, meal and childcare costs were reimbursed, the transportation to the study site was assured, and the appointments for screenings and visits were scheduled with flexibility [18].

Inequities can inadvertently affect all phases of a clinical trial, starting from the design, but they can be avoided with a wide range of strategies [19].


Written by Stefania de Vito

Special thanks to Natalie Busari, founder of The Nerve of My Multiple Sclerosis, and Professor Ruth Dobson  of Queen Mary University of London for their insights.


[1] Dobson R et al. Nat. Rev. Neurol. 2022; 18(12): 723-734.

[2] Hommes OR (Ed.). Multiple Sclerosis Research in Europe: Report of a Conference on Multiple Sclerosis Research in Europe, January 29th–31st 1985, Nijmegen, The Netherlands. Sponsored by the Commission of the European Communities, as Advised by the Committee on Medical Public Health Research; 1986. Springer Science & Business Media.


[4] Mallawaarachchi G, Rog DJ, & Das J Mult. Scler. Relat. Disord. 2023; 81(105153).

[5] Jakimovski D et al. Lancet 2024; 403(10422): 183-202.

[6] Langer-Gould AM et al. Neurology, 2022; 98(18): e1818-e1827.

[7] Romanelli RJ et al. BMC Neurol. 2020; 20: 1-8.

[8] Robbins NM et al. Neurol. 2022; 99(3): 106-114.

[9] Marrie RA et al. Mult. Scler. J. 2023; 29(9): 1174-1185.

[10] McGinley MP et al. Neurol. 2024; 102(2): e207916.

[11] Briggs FBS et al. Int. J. MS Care 2024; 26(1): 36-40.

[12] Marrie RA et al. Mult. Scler. J. 2008; 14(8): 1091-1098.

[13] Calocer F et al. Mult. Scler. J. 2023; 29(3): 466-470.


[15] Finlayson M, Al-Mashita L, & Sandhu R. Mult. Scler. J. 2023; 29(9): 1149-1157.

[16] Gray E et al. Mult. Scler. J. 2023; 29(9): 1162-1173.

[17] Pimentel Maldonado DA et al. Int. J. MS Care 2021; 23(4): 170-177.

[18] Williams MJ et al. CMSC Annual Meeting 2021, October 25-28.

[19] Lizarraga KJ et al. Ann. Neurol. 2024.