For many women living with multiple sclerosis (MS), questions about reproductive health, like pregnancy, family planning, and breastfeeding, can be especially difficult to navigate. These concerns often arise during the prime reproductive years, when MS is most commonly diagnosed, and yet many women report feeling underserved or even overlooked when seeking information and support.

While research on MS and reproductive health is growing, much of it remains concentrated in high-income countries. In many parts of the world, especially in resource-limited settings, women with MS (WwMS) continue to face significant barriers in accessing clear, reliable, and relevant information about their health.

To help bridge this gap, we’ve launched the KNOWwMS project: a global initiative designed to understand and address the unmet information needs of women with MS regarding reproductive health.

What Is KNOWwMS?

KNOWwMS (Knowledge Gaps in Reproductive Health among Women with MS) is an international, mixed-method research project aiming to define a Core Knowledge Set, which is a clear, evidence-informed summary of what every woman with MS should know about reproductive health.

This knowledge set will be especially tailored for low- and middle-income countries, where resources and access to specialized care may be limited. 

How Does It Work?

The project is unfolding in three main phases:

1. A systematic scoping review to map existing research and understand what is already known (and unknown) about the information needs of WwMS related to reproductive health.
2. Two global surveys, one for women with MS and one for MS healthcare professionals, to gather real-world insights on knowledge gaps, information sources, and access to counselling in diverse healthcare settings.
3. Using the results of the literature review and surveys, the KNOWwMS Scientific Advisory Group (SAG) will develop the Core Knowledge Set covering three main themes: family planning, pregnancy, and breastfeeding. The content will be created in plain language and accompanied by illustrations to make it clear and accessible.

This information will be shared both digitally and in print, distributed through clinics, advocacy networks, and online platforms. Materials will be adapted for local settings, languages, and needs, with support from “country champions” who will help coordinate outreach and ensure cultural relevance.

Stay tuned as we share updates from the project!

Do you want to know more?

Join us for our upcoming international webinar in celebration of World MS Day on May 30th, 2025, where we’ll explore early findings from the KNOWwMS project alongside expert insights and real patient experiences. For more info: World MS Day 2025 Registration link - Reproductive Health in Women with MS: Global Voice

Scientific Advisory Group (SAG)

For any question you can contact us at cocrane.ms@ausl.bologna.it