How can we improve health and well-being for women living with MS?

There are many gaps in our understanding of how certain features of women’s health might affect people with MS differently. For example, there are few studies looking at the impact of menopause, contraception, or cancer in women living with MS. A working group from the International Advisory Committee on Clinical Trials in MS wanted to find out which of these gaps in our knowledge are most important for people affected by MS, to establish priorities for future research.

The findings were published in February 2024: Priority setting: women’s health topics in multiple sclerosis.

MSIF was pleased to support this effort, through enabling consultation with members of our International Medical and Scientific Board (IMSB) and – with the support of our member organisations – people affected by MS across the world.

The working group used a three-step process to refine a large range of topics into priority research questions. First, they surveyed 1430 individuals to find out which broad topics were highest priority for them. Over 80% of respondents were people living with MS, and the rest were care partners for people with MS, clinicians, researchers, or members of patient advocacy organisations. Second, consultations with focus groups – including members of MSIF’s IMSB – developed specific research questions within each of the top six topics. Finally, these research questions were prioritised through another survey.

At the end of the process, the highest priority questions within each of the six topics were:

• How do perimenopause and menopause affect disease activity, course, response to disease-modifying treatment and quality of life in MS?
• What are the most effective strategies for managing issues around sexual intimacy, including related to low sexual desire, changes in physical function, and MS symptoms?
• Are there long-term effects of disease-modifying therapies on the children of persons with MS?
• What are the short and long-term effects of disease-modifying drugs on gynaecologic cancer risk, particularly for high efficacy disease-modifying drugs and hematopoietic stem cell transplantation?
• Are there hormone related treatments that can stabilize fluctuations in MS symptoms?
• How does MS fatigue impact parenting strategies?

Discover the full list of priority questions here.

Professor Ruth Ann Marrie, the senior author of the study, says:

“The findings from this priority-setting work will help guide future research efforts focused on women’s health issues in MS. We also hope that the high-priority topics we have identified will be used by healthcare professionals to guide discussions in clinical settings.”

Further work will be needed to monitor how future research aligns with these priority questions, as well as ensuring that the results of this research reach people affected by MS and healthcare professionals across the world.

Find out more:

• Read more about this topic on the ECTRIMS blog.
• Read the full publication: Priority setting: women’s health topics in multiple sclerosis
• Find information and resources about women’s health on our Resource Hub: Pregnancy, fertility and women’s health.