Understanding the Unmet Needs of People with MS at Diagnosis and Throughout Their Care Journey: Insights from a Survey-Based Study

MS21 achieves its 15th peer-reviewed publication

MS in the 21st Century (MS21) marks its 15th peer‑reviewed publication, Understanding the Unmet Needs of People with MS at Diagnosis and Throughout Their Care Journey: Insights from a Survey-Based Study, co-authored by a multidisciplinary group spanning clinical expertise, lived-experience, and advocacy leadership.  The publication, available open access in Neurology and Therapy, shares new survey-based insights into the specific needs people have at the time of diagnosis, and how we can better empower people with MS to have informed, confident conversations throughout their care journey.

Clear, consistent communication, reliable resources, and timely access to support services—including emotional and psychological support – persist as unmet needs, particularly at diagnosis. Strengthening these elements can help people with MS feel more supported, more informed, and more confident in shared decision-making over time.

About MS in the 21st Century (MS21)

MS in the 21st Century (MS21) is a long-standing, global collaboration across a multidisciplinary advisor community, supported by Merck KGaA, Darmstadt, Germany.  Established in 2011, the MS21 program aims to unify the voices of people living with MS, healthcare professionals, and patient advocacy leaders to represent the community and improve communication between healthcare teams and people living with MS.  The MS21 initiative was set up to:   

• Understand unmet needs in real-world MS care
• Strengthen patient–HCP communication and shared decision-making
• Co-create evidence-based resources and practical solutions
• Share learnings broadly through publications and other educational outputs

At Lumanity, we’re proud to have supported MS21 in bringing this important research to publication, and to share yet another shining example of meaningful co-authorship in practice: patients, HCPs, and patient advocacy group representatives working side-by-side to shape recommendations that are grounded in real experiences.

Note: This content is shared for informational and educational purposes and does not constitute medical advice. People living with MS should consult qualified healthcare professionals regarding individual care decisions.