#099: Insights from Groundbreaking MS Studies on Risks, Trends, and Equity an ECTRIMS Special

In this overview of papers from ECTRIMS 2024, I have selected studies that look at development and frequency and influence progression. You will learn about the role of Epstein-Barr virus infections and the effects of social and health inequalities on the course of MS. These studies also highlight the growing need for inclusion in clinical trials and the importance of monitoring MS trends worldwide. By exploring these insights, we can better understand the complexities of MS and learn how they shape the future of care and research for the MS community.

Table of Contents

1. Risk and onset of multiple sclerosis after infectious mononucleosis (IM): a population-based study of >650,000 cases of IM

by Dr. Dalia Rotstein et. al (Canada)

If you are trying to understand the causes of why you have MS, you may have heard about a link between the Epstein-Barr virus (EBV) and the risk of developing MS. I discussed it in detail in the interview with Prof. Christian MĂ¼nz. A recent study examined this link and focused on the question of how infectious mononucleosis (IM), a symptomatic form of EBV infection, could influence the temporal course and risk of developing MS. The results provide valuable insights into what contributes to MS risk and which factors could accelerate the progression of the disease.


What Was the Study About?

This large population-based study examined the risk factors for developing MS after having IM. Using health data from over 669,000 individuals in Ontario, researchers identified 2,475 people who went on to develop MS and analyzed how various factors like age, sex, and mental health influenced this progression.


Key Findings

  • Age at IM Matters: People who contracted IM between the ages of 10–25 had the highest risk of developing MS later in life, compared to those who had IM before age 10.

  • Female Sex is a Risk Factor: Women were more likely to develop MS after IM than men. However, the time it took to develop MS was similar between sexes.

  • Mental Health Plays a Role: Those who used mental health services before IM had a slightly higher risk of developing MS. This suggests a potential link between mental health and immune system regulation in MS.

  • Median Time to MS: On average, people who developed MS did so 11.5 years after IM, with variations based on factors like age at infection.


Why This Matters for You

Understanding what might increase the risk of MS can help researchers and healthcare providers design better prevention and treatment strategies. While factors like age and sex can’t be changed, mental health is a modifiable area where early intervention might make a difference. These findings emphasize the importance of monitoring long-term health after IM, especially for those at higher risk.


How Reliable is This Study?

This research is based on a large dataset and used robust statistical methods to ensure accuracy. It provides moderate evidence on the Cochrane scale, meaning the findings are meaningful but not definitive. While the study can’t prove causation, it highlights strong associations that warrant further exploration.


What Can You Do?

If you’re concerned about MS risk after EBV or IM, here are some steps to consider:

  1. Stay Proactive: Regular health check-ups and early discussions with your healthcare provider can help identify and manage any risk factors.

  2. Focus on Mental Health: Addressing stress, anxiety, or other mental health concerns might support your overall well-being and immune function.

  3. Educate Yourself: Understanding MS risk factors and discussing them with your doctor can empower you to make informed decisions.


Takeaway

This study reinforces the importance of monitoring long-term health after an EBV infection like IM, especially for women or those with mental health challenges. While no one can predict MS with certainty, early awareness and proactive care can make a difference. Remember, you’re not alone in navigating these questions—researchers and healthcare providers are working hard to uncover the answers that matter most to you. Take one step at a time, and trust that every effort contributes to your well-being.

2. Rising prevalence of Multiple Sclerosis in Switzerland – Results from the Swiss Multiple Sclerosis Registry

by Stefania Iaquinto et. al (Switzerland)

A recent study by the Swiss Multiple Sclerosis Register (SMSR) has identified an increase in MS prevalence in Switzerland between 2016 and 2021. This study sheds light on the trends and factors contributing to MS in the country and helps us understand the bigger picture.

What was the study about?

The aim of the study was to update and analyze the prevalence of MS in Switzerland using data from the SMSR, national treatment databases, and mortality statistics. The researchers wanted to find out how many people are living with MS (pwMS) and whether factors such as age, gender, and treatments have influenced the trends.

Key findings

  1. Increase in MS prevalence:
    • In 2021, the number of people with MS in Switzerland was estimated at 18,130. This represents an increase of 20% (about 3,000 people) compared to 2016.
    • About one-fifth of this increase is due to population growth, suggesting that other factors such as improved diagnosis or reporting may also play a role.
  2. Age and gender:
    • The median age at diagnosis remained stable at 36 years, with the highest number of cases observed in the 45–50 age group.
    • The female to male ratio was 2.7:1, demonstrating that MS continues to affect more women than men.
  3. Treatment trends:
    • More people with MS are receiving disease-modifying therapies (DMTs), which increased from 62.1% in 2016 to 68.9% in 2021.
    • The largest increase was in infusion therapies, from 9.8% to 15.9%.
  4. New diagnoses:
    • Between 2017 and 2021, approximately 7–8 new cases of MS per 100,000 people were diagnosed each year.

Why does this matter to you?

These results underscore the importance of education, research, and access to effective MS treatments. The increase in prevalence could be due to better healthcare systems that diagnose and treat MS earlier and more effectively. The increasing use of DMT suggests progress in treating MS and improving long-term outcomes.

How reliable is this study?

This study is based on robust data from multiple national sources and provides a high-quality estimate of MS prevalence. It provides moderate to strong evidence on the Cochrane scale due to its comprehensive approach and large data set. However, as with all research, it highlights areas that require further investigation, such as the non-population-related factors that influence MS prevalence.

What can you take away from this?

  1. Stay informed: knowing that MS prevalence is increasing can be overwhelming, but it also highlights the importance of research and the progress made in the diagnosis and treatment of MS.
  2. Take charge of your care: As more people receive treatment, it is important to be proactive about your care. If you are not yet receiving treatment, consider discussing DMT options with your doctor.
  3. Focus on the community: The growing number of people with MS highlights the need for stronger support networks and advocacy efforts.

Final thoughts

This study highlights the importance of understanding and addressing MS at the population level. The MS community is growing and is supported by continued research and better treatment options. New advances are being made every day. Staying informed and proactive will help you manage your MS journey with confidence.

3. Multiple Sclerosis in the Greenlandic population

by Nete Munk Nielsen et. al (Denmark)

A recent study was conducted to compare the prevalence and incidence of MS in Greenland with that in Denmark, a country known for its higher rates of MS.

What was the aim of the study?

The aim of this study was to estimate the prevalence of MS in Greenland and whether certain population groups, such as the Inuit, are at higher risk. Using over 40 years of health data from Greenland and Denmark, researchers looked at:

  1. how many cases of MS were diagnosed between 1973 and 2018.
  2. What is the prevalence of MS in Greenland compared to Denmark.
  3. Differences in MS rates between Inuit and non-Inuit populations in Greenland.

Key findings

  1. Fewer cases than expected:
    • Only 23 cases of MS were recorded in Greenland between 1973 and 2018. The overall rate was 0.92 cases per 100,000 people – significantly lower than the MS rates in Denmark.
  2. 2016 snapshot:
    • In 2016, the estimated prevalence of MS in Greenland was 14.34 per 100,000 people, which is significantly lower than the rates reported in Denmark during the same period.
  3. Population differences:
    • The risk of MS for Inuit living in Greenland was very low, at only 2% of the Danish risk of MS (standardized incidence ratio, SIR: 0.02).
    • Non-Inuit individuals in Greenland had a higher risk than Inuit, but still 36% lower than the MS rates in Denmark (SIR: 0.64).
  4. Additional analysis:
    • When additional registry data were included, MS rates increased slightly but remained significantly lower than in Denmark.

Why this matters to you

This study challenges previous claims that Greenland has a very high prevalence of MS. Instead, the results show that MS is much less common in Greenland than in Denmark. These findings highlight how genetic, environmental and lifestyle factors may play a role in the development of MS. For example, Inuit populations had an incredibly low risk of MS, which could provide important clues for future research. This is despite the great distance from the equator and thus less exposure to sunlight.

How reliable is this study?

The study uses nationwide health registry data from more than 40 years, making it highly reliable. It analyzed data from large, well-documented databases, which increases the accuracy of the results. However, limitations include the relatively small number of MS cases in Greenland, meaning the results may not be universally applicable. On the Cochrane scale, this study provides moderate to strong evidence.

What can you learn from it?

  1. MS risk factors vary: Geographic location, genetics, and lifestyle all influence MS risk. The low rates in Greenland, particularly in the Inuit population, suggest that factors such as diet, environment, or genetics may protect against MS.
  2. Be informed, don’t be alarmed: Although MS rates vary across the globe, ongoing research is helping us to better understand the disease and its triggers.
  3. Support research: Studies like this provide valuable insights into the epidemiology of MS and pave the way for improved prevention and treatment worldwide.

Final remarks

This study provides hopeful news: MS rates are far lower in some regions than previously thought, and learning more about these differences could lead to breakthroughs in prevention. The thesis that the prevalence of MS increases continuously the further a country is from the equator is not true in this case and must therefore be considered in a more differentiated way and the causes examined more closely.

4. African American and Non-Hispanic White people with multiple sclerosis: social determinants of health and health inequities.

by Marta Ponzano (Italy)

Research shows that social factors can influence the course of MS in different groups of people. A recent study focused on African American (AA) and non-Hispanic white (NHW) patients with relapsing-remitting MS (RRMS) to examine how social determinants of health (such as income, education, and access to healthcare) might explain differences in disease progression.

What was the study about?

The study aimed to:

  1. compare social factors such as income, education and access to healthcare between African American and non-Hispanic white patients with MS.
  2. explore whether these differences could explain differences in the course and outcomes of MS.

How was it done?

The researchers studied 120 RRMS patients (60 AA and 60 NHW) who matched for age and sex. They analyzed data on:

  • social factors such as income and education.
  • MS-related outcomes, including disability levels and walking/cognitive performance.
  • health conditions such as cardiovascular disease and body weight.

Key results

  1. Social inequalities:
    • African American patients were more likely to have lower income, less education, and less access to home ownership than non-Hispanic white patients.
    • African American patients also reported longer delays in starting MS treatment after diagnosis.
  2. Health and nutrition:
    • African American patients had higher body mass index (BMI) and lower dietary protein intake, but higher carbohydrate intake, which could affect the progression of MS.
  3. MS outcomes:
    • Initially, African American patients appeared to have worse walking and cognitive test scores.
    • After adjusting for social factors, these differences were less pronounced, suggesting that social inequalities may contribute to differences in MS outcomes.

Why is this important?

This study highlights how social and health inequalities can affect MS outcomes. Taking these social factors into account could help improve care and quality of life for all people with MS, especially for underserved groups.

How reliable is this study?

It was a cross-sectional study, meaning it provides a snapshot of data at a specific point in time. While it provides moderate-level evidence, it cannot prove cause-and-effect relationships. The use of robust statistical methods strengthens its reliability, but more research is needed to confirm these findings.

What can you do?

  • Stand up for equitable care: If you feel your needs are not being met, speak up and seek support from advocacy or patient networks.
  • Focus on diet and lifestyle: A balanced diet and exercise can help manage the symptoms of MS.
  • Stay informed: Being educated about your condition and the resources available will help you make informed decisions about your care.
  • Seek support in the community: Reach out to MS support groups to share experiences and provide mutual encouragement.

The bottom line

This study reminds us of the importance of addressing social and health inequalities to ensure that every person with MS receives the care and support they deserve. Remember, you are not alone – there are resources and communities available to help you navigate your MS journey with strength and confidence. Together, we can work towards better outcomes for all.

5. Clinical Trial Awareness among African Americans

by Dr. Annette Okai (United States)

Have you ever wondered why some groups are underrepresented in research and clinical trials? Historically, MS studies have primarily focused on white populations, overlooking the fact that African Americans are affected by MS at comparable rates to other groups. A recent study highlights the gaps in clinical trial participation among African Americans with MS and examines ways to address these disparities.

What was the study about?

This study examined whether African American patients in the National African Americans with MS Registry (NAAMSR) were able to participate in clinical trials. The aim was to uncover barriers to inclusion and highlight the need for diverse representation in MS studies.

Key findings:

  1. Limited discussion of clinical trials:
    • Only 16.9% of respondents were informed about clinical trial opportunities during their treatment discussions.
    • Over 50% of eligible participants were never considered for clinical trials despite meeting standard criteria.
  2. High rate of treatment changes:
    • Almost 60% of participants had changed disease-modifying therapies (DMTs) in the past seven years.
    • The main reason for these changes was evidence of disease activity on MRI scans or a relapse.
  3. Inequalities in study participation:
    • More than 80% of participants reported not being offered clinical trial options. Even in academic or specialized MS centers, few discussions about studies were reported.

Why does it matter to you?

Diversity in clinical trials is essential to understanding how MS treatments work across different ethnic groups. Without equitable representation, we miss opportunities to uncover unique treatment responses or risks that could improve care for everyone.

How reliable is this study?

The study used data from a well-defined group of African American people with MS and provided medium-quality evidence. The results highlight systemic barriers, but are based on patient surveys that may contain some biases. However, the high response rate (72%) adds credibility to the results.

What can be done to improve diversity?

  • Increased awareness: HCPs should discuss clinical trial opportunities more frequently and ensure that patients are aware of the options available.
  • Proactive recruitment: A targeted effort must be made to recruit African Americans into MS trials to address the historical underrepresentation.
  • Community representation: Patients and advocacy groups can push for policies that prioritize equitable access to clinical research.

The bottom line:

If you are African American and have MS, your participation in clinical research studies could not only benefit you but also pave the way for better treatment options for others in your community. Talk to your healthcare provider about clinical research opportunities and advocate for greater inclusion. Remember that your voice and experience matter – together, we can work toward a future where MS care is equitable and effective for all.

See you soon and try to make the best out of your life,
Nele

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Nele von Horsten

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