Momentum at Milan | Advancing Real-World Insight at the European Haematology Association Congress, EHA2025

A year on from our time in Madrid at EHA2024, I write this as the Sanius team prepares to return to the congress stage – this time looking forward to meeting clinical colleagues and industry partners at the Allianz MiCo, Milano Convention Centre in Milan. EHA2025’s core call to action this year is revolutionising the way we learn and connect in haematology, and looking back, it has truly been a year of deepened collaborations, accelerated real-world evidence generation, and an unrelenting focus on putting the patient voice at the heart of how we understand each and every disease we work in. And as we head towards the 30th EHA Congress, I’m delighted to share a few snapshots of how that work has been progressing.

Last year, our team explored some of the most pressing questions across sickle cell disease (SCD) and Waldenström Macroglobulinaemia (WM), designed to help advance how we delve into and measure patient experiences in haematology. Our first abstract focused on mapping the prodromal stage of vaso-occlusive crises (VOCs) in SCD – part of our continued effort with clinical colleagues and patient communities to better understand the physiological and symptomatic signals that precede a crisis, and how this can be driven by both patient-driven insights and specific elements of passive data capture to allow for earlier intervention.

Combining insights from a dedicated patient workshop with biometric analysis from a cohort of real-world ecosystem patients, this work highlighted both the variability and commonalities across patient experiences of the onset of a VOC. Of note, patient-reported prodromal durations were found to range from one to seven days, with shared triggers including physical or emotional stress reported by all workshop participants. With wearable data analysis revealing statistically significant increases in both sleep and active heart rates during the prodromal stage compared to baseline, our work identified potential physiological signals that could in turn help us to support patients and clinical teams with earlier identification and management.

Alongside this, we shared an update to our ongoing model of real-world wearable use in WM, demonstrating how continuous data from patients can illuminate the impact of rare conditions in ways that traditional endpoints too often miss. Using CE-marked wearables integrated with daily electronic patient-reported outcomes (ePROs) over a 142-day longitudinal period, we found key symptoms across this specific cohort with particularly high severities, including ‘fatigue’, ‘weakness’, and ‘numbness/tingling’. Critically, increased physical activity correlated with reduced symptom severity and improved QoL scores, while analysis of patients receiving BTKi therapy showed significantly higher nightly wake-up counts compared to those not on BTKi – adding new granularity to our understanding of treatment-linked experience profiles in this population.

This year, we return with seven new abstracts accepted for EHA2025, each one building on that foundation and reflecting the growing breadth of our data, our core conditions, our partnerships, and the central questions we continue to explore in the journey to advancing outcomes for patients with haematological conditions. Our new contributions span multiple disease areas, with a continued emphasis on lived experiences and the granular realities of recovery, instability, and everyday life with chronic haematological conditions.

Beginning with our very first indication, SCD, analysis focused on the recovery period following Emergency Department (ED) attendance has captured insights into post-discharge outcomes that draw from multi-source insights – a digital patient survey, QoL-linked ePROs, and wearable data. Across patients with recent admissions, those who returned to hospital within one month reported higher ECG heart rates, increased calorie expenditure, greater fatigue, and lower sleep quality over the post-discharge period – alongside higher rates of complications such as sciatica. While face-to-face follow-up was most commonly reported, patient-rated effectiveness was highest for telephone check-ins and home-based care. Notably, nearly one-third of patients returned to the ED within 30 days, underscoring an urgent need for more effective, proactive models of post-ED care for patients with SCD.

In parallel, our second abstract explored emergency care itself, collating real-world SCD patient experiences across UK regions. Across the snapshot survey cohort, pain severity was recorded at a mean of 8 out of 10 on presentation at ED – yet one-third of patients waited over an hour to receive pain relief. While satisfaction scores were broadly similar across walk-in and ambulance arrivals, free-text sentiment analysis revealed the central importance of compassion, communication, and timely care delivery in ensuring a positive experience. Satisfaction and perceptions of care quality were directly linked to recovery outcomes, with those reporting faster recovery and more efficient pain relief also rating satisfaction with their ED experience higher. Interestingly, major treatment centres did not always outperform regional hospitals, and geographical variation in care experience remains an area that requires further exploration to ensure the very best outcomes for patients.

Beyond SCD, our work has seen us explore these remotely monitored biometric and symptom data insights in chronic myeloid leukaemia (CML) over a snapshot of six months. With key data captured through a tailored and dedicated app, MyCML+, patients on second-line therapy reported significantly worse EQ-5D-5L scores, increased symptom burden, and reduced daily functioning compared to those on first- or third-line regimens. As an insight into sex-based differences at a daily level, male patients reported overall lower QoL scores than females, yet higher wearable-recorded daily activity metrics despite lower average heart rates during both sleep and active periods.

Similarly, in multiple myeloma (MM), we present key findings from our MyMM app pilot, which integrates real-time ePRO and wearable monitoring to better understand core symptom burden, QoL patterns, and the impact of supportive medications. Among younger patients – those under 50 – both EQ-5D-5L-measured QoL and symptom burden were found to be higher across nearly all domains, including weakness, vomiting, and psychological wellbeing. Despite this, and likely owing to general lifestyle differences across age bands, this group recorded greater physical activity, calorie expenditure, and sleep quality metrics. Critically, this work forms the first step in establishing real-world symptom profiles and demographic trends within the MM cohort with continuous and longitudinal data, offering critical early insight into the distinct experience profiles of younger MM patients, and the potential of digital tracking to personalise care.

We are also excited to be sharing three additional pieces of work at EHA2025 in Milan as poster presentations. These focus on the acute and post-acute experience of SCD, including the variation in recovery following VOC episodes, the use of real-time patient-reported outcomes and wearable data to better understand – and potentially predict – the onset of crises, and real-world monitoring insights from our Myeloproliferative neoplasms study (MPN) in partnership with Guy's and St Thomas' NHS Foundation Trust and MPN Voice. While we can’t share full findings ahead of the June embargo, both posters offer powerful insights into the utility of continuous digital monitoring in supporting earlier, community-based interventions that ultimately help patients to better manage recovery outside of the hospital, and we would love to walk you through our work in person.

None of this would be possible without patients, who each day share their time, data, and insights to drive better research and understanding, both for themselves and for the wider community. The story of real-world evidence is not just a clinical one; it is a deeply human one, and as ever, we are immensely grateful to every patient, partner, and clinician who makes this work possible.

If you’ll be at EHA2025 in Milan, please do come by the posters or reach out to me and the team. These conversations are what fuel the next steps in evidence, design, and impact, and we truly look forward to sharing, listening, and learning together.

See you in Milan.