Researchers need your help to fill the knowledge gaps that leave women with MS and their care teams without the evidence they need to make the best clinical decisions.
A survey by a team working on behalf of the International Advisory Committee on Clinical Trials in MS – a global body jointly supported by ECTRIMS and the National MS Society – will gather views from people living with MS, their caregivers, healthcare professionals, and other stakeholders on research priorities in women’s health.
It is the second survey to be conducted after a scoping review by the group, published in 2021, found a lack of evidence on a wide range of issues affecting women living with the condition, despite them accounting for the majority of patients. [1]
Wrote the authors: “Women with MS may face challenges related to managing reproduction, pregnancy, and menopause while simultaneously managing their disease… While research surrounding the experience and management of women’s health issues in MS has increased over time, women living with MS, clinicians, and researchers recognise that knowledge gaps remain.” [1]
Knowledge gaps [1]
The review of more than 350 studies published between 1980 and 2020 found considerable “knowledge gaps”. [1]
Around three-quarters of all eligible studies included in the review looked at pregnancy and related issues, foetal and neonatal outcomes, and sexual dysfunction. Few focused on other topics important to women living with MS, including menopause, birth control, assisted reproduction, cancer screening, and gender identity.
In addition, the majority of studies focused on relapsing-remitting MS. “Studies that included participants with progressive MS were clustered predominantly in two topics: pregnancy and sexual dysfunction,” wrote the authors. Even among the studies that focused on menopause, which typically occurs around the age of 50 when many women with MS will have progressive forms of the disease, fewer than one in five participants enrolled had progressive MS.
The majority of studies, 87%, did not report on the race or ethnicity of participants, despite the importance of understanding the effects of such factors on health outcome. Furthermore, most of the studies were conducted in North America and Europe, with very few originating in the Asia-Pacific and African regions. “Race and ethnicity are social constructs without biologic meaning, but they intersect with social determinants of health and inequities associated with health outcomes,” stated the paper.
Many common topics of women’s health, including contraception, assisted conception, and breast cancer received little attention over the 40-year review period, with fewer than 15 studies each.
Improving the evidence base
The scoping review was part of a project by an International Advisory Committee on Clinical Trials in MS women’s health working group. On the behalf of the committee, which is sponsored by ECTRIMS and the US National MS Society, the research group has since conducted a programme of work, including a survey to determine the most important research priorities in the area of women’s health for women living with MS.
Professor Ruth Ann Marie, of the University of Manitoba’s Max Rady College of Medicine in Winnipeg, Canada, and member of the women’s health working group, said: “Subsequently, we organised focus groups to develop questions within the top identified research areas: menopause, hormones, pregnancy, sexual dysfunction, parenthood, gynaecologic cancer/cancer screening.
“Our goal now is to conduct another survey to prioritize the research questions within these areas. We are interested in perspectives from people living with MS and caregivers, as well as clinicians, researchers and policymakers.”
To take part in the five-minute survey, which is anonymous and can be completed in English, French, or Spanish, follow the relevant link below:
English: https://ais.swmed.edu/redcap/surveys/?s=8XJPD3PLCJ483KRL
French: https://ais.swmed.edu/redcap/surveys/?s=8XJPD3PLCJ483KRL
Spanish: https://ais.swmed.edu/redcap/surveys/?s=8XJPD3PLCJ483KRL
About the MS Clinical Trials Committee
The International Advisory Committee on Clinical Trials in MS provides perspective and guidance in areas of interest to planning and implementation of clinical trials for new agents for the treatment of multiple sclerosis. The Committee has been in existence for over 30 years and is composed of experts in clinical trials and clinical research in MS.
[1] Ross, L., Ng, H. S., O’Mahony, J., Amato, M. P., Cohen, J. A., Harnegie, M. P., … & Marrie, R. A. (2022). Women’s health in multiple sclerosis: a scoping review. Frontiers in neurology, 12, 812147.