Advancing MS Research Through Data, Discovery, and Patient-Driven Innovation,  Rome

Progress in data science and hypothesis generation must go hand in hand in health research. This is especially true in the fight against complex brain disorders such as Multiple Sclerosis (MS)—a field that has seen significant strides over the past 30 years. Yet, accelerating discovery and improving outcomes in MS demands going the extra mile on both fronts. This vision is being actively pursued by the Italian Multiple Sclerosis Society (AISM), under the leadership of Mario Alberto Battaglia and Paola Zaratin. NeuroCentury’s Paweł Świeboda spoke on 27 May 2025 at the Society’s Annual Scientific Congress in Rome.

Building a Data-Driven Future for MS

One of the most critical steps is achieving a step-change in the collection and quality of data. Italy is setting a strong example in this space, through the advancement of its national MS Registry and the development of Barcoding MS—a pioneering initiative that integrates deep phenotyping with longitudinal data. These resources are enabling researchers to uncover new biological insights and intervene earlier in the disease trajectory. A shared aspiration in the MS research community is the identification of a plasma biomarker capable of indicating the biological phase of the disease. As participants noted, observable symptoms often obscure complex, underlying mechanisms. Detecting these before disease progression becomes irreversible is essential for improving prognosis and treatment.

AI and Network-Based Research: A New Frontier

Artificial intelligence is rapidly transforming every stage of biomedical research. In a keynote address, Prof. Sergio Baranzini (UCSF) presented groundbreaking work on SPOKE (Scalable Precision Medicine Oriented Knowledge Engine), a biomedical knowledge network that integrates vast troves of biological, clinical, and chemical data. SPOKE enables knowledge network-based representations and machine learning to uncover early indicators of disease, allowing for proactive, personalised interventions. With traceable and transparent data pathways, this model is shaping a new standard for precision medicine.

Patients at the Heart of Progress

A recurring theme throughout the Congress was the importance of placing patients at the centre of the data ecosystem. As Rachele Michelacci, Vice-President of the MS Society and a person living with MS, powerfully stated: “Behind every data point, there is a patient.” Data becomes a truly transformative tool only when patients are fully engaged throughout the research and care journey. Giampaolo Brichetto highlighted the PROMS initiative, which is advancing the integration of patient-generated outcomes into clinical practice—ensuring that digital health tools better reflect real-world complexity and improve decision-making. This mission aligns closely with the goals of the IMI-funded IHI IMPROVE project, which aims to place patient-generated health data at the core of clinical care. Frans Folkvord (PredictBy) explained how this approach is reshaping how health systems use data to deliver better, more personalised care.

Bridging the Gaps: Towards a Science of Patient Input

Despite growing momentum, the science of patient input remains fragmented, as Paola Zaratin pointed out. Yet, AISM is at the forefront of addressing this gap—building bridges between scientific research, regulatory frameworks, and the lived experience of patients. The Congress underscored a collective commitment to turning rich, complex data into actionable knowledge—and ensuring that the voice of the patient remains a guiding force every step of the way.