After seven years of collaboration, innovation, and scientific discovery, the IDEA-FAST project came to a successful close with its Final Conference on Wednesday, 17 June 2026. Held in Hamburg and online, the event brought together more than 150 participants from across Europe and beyond, including consortium members, external partners, researchers, clinicians, patients, and other stakeholders. The Conference was a vibrant celebration of the project’s achievement, featuring inspiring keynote speeches, engaging panel discussions, and active audience participation. As the day unfolded, the answer lay not only in sensors, algorithms, or digital endpoints, but in the difficult work of connecting lived experience with rigorous science. The strongest moments of the conference came when speakers resisted the temptation to present IDEA-FAST as a finished solution, and instead showed why fatigue remains one of the most complex, consequential, and under-measured symptoms in chronic disease. The energy, enthusiasm, and ambition shared throughout the day reflected not only the remarkable progress made over the past seven years, but also the lasting impact that IDEA-FAST has brought to digital biomarkers for discovery and research.
The conference was opened by Wan-Fai Ng (University of Newcastle) and Nikolay Manyakov (Johnson & Johnson), the scientific coordinator and industry lead of the IDEA-FAST project, respectively. Together, they reflected on the consortium’s ambitious vision, the challenges that proved more complex than initially anticipated, and the remarkable progress achieved over the course of the project. They emphasized that IDEA-FAST has generated not only a wealth of valuable data and exploitable assets, but also numerous opportunities for future research and innovation.
That opening set the tone for the day: this was not a listing of deliverables; it was a handover. IDEA-FAST has produced major scientific resources, but its long-term value will depend on what researchers, clinicians, industry partners and patient communities now do with it.
Why fatigue matters
The first part of the conference made clear why the measurement of fatigue cannot be treated as a technical side issue.
Cate Titterton (Patient Specialist) shared her perspective as a patient who has been actively involved in the IDEA-FAST project. She highlighted how fatigue is often unpredictable, misunderstood, and underdiagnosed, describing her 28-year journey to receiving the right questions about her symptoms. Her account gave the conference its emotional and scientific centre. Fatigue, she explained, is not ordinary tiredness. It can be mental as much as physical; it can leave people dissociated from daily life; and rest does not necessarily restore what the symptom takes away. For patients, the problem is not only the fatigue itself, but the fact that it is often unseen, unexplained, and disbelieved.
Andrea Pilotto (University of Brescia) subsequently shared his perspective as a clinician, emphasizing that fatigue affects between 30% and 70% of patients, yet remains insufficiently assessed in routine clinical practice due to its complexity. He further highlighted how IDEA-FAST has aided in creating a bridge for patient-clinician communication regarding fatigue. The clinician’s perspective sharpened the challenge: fatigue is common, but clinical systems are still not designed to listen to it consistently. The conference repeatedly returned to a deceptively simple requirement: patients need time to be heard, and clinicians need better tools to interpret what they hear.
The societal impact of fatigue was highlighted by Prof. Anne Letsch (Kiel University). She emphasized fatigue’s role as an “invisible” social factor, creating burden in all facets of life, from family and social life to education and employment. She noted that “what matters to patients must become measurable” and praised IDEA-FAST for bringing together diverse perspectives to improve the understanding, measurement, and translation of fatigue data into better care. This was one of the day’s clearest messages. Fatigue is not only a medical symptom, but a social force. It shapes work, education, relationships, independence, and participation. Its invisibility makes it easier to underestimate, but not less damaging. As one speaker put it, collecting data is not innovation in itself. Innovation begins when data can be translated into decisions and care.
Sebastian Holst (Roche) followed with an introduction to the importance of fatigue from an industry perspective, and how IDEA-FAST has aided the research on fatigue-related biomarkers that can be implemented into trials to test drugs. From an industry perspective, the question becomes urgent and practical: when a new treatment is developed, can we tell whether it actually improves the fatigue that matters to patients? Digital biomarkers could help trials capture symptoms that traditional endpoints miss, but only if those measures are robust, interpretable, and acceptable to the people asked to wear the devices.
The measurement gap
The rest of the day followed four linked themes: Running a Large Digital Biomarker Study, Understanding What Patient-centred Participation Really Means, Making Sense of Complex Multimodal Data, and Turning Research Outputs into Future Use. Together, these themes told a story of digital health at its most ambitious and most honest.
Throughout the day, attendees also had the chance to peruse the IDEA-FAST Poster Section and Interactive Area and learn more about the project’s direct outcomes and devices. The interactive area was a useful reminder that digital endpoints are not abstract concepts: they live in patches, sensors, apps, diaries, Bluetooth connections, batteries, mattresses and daily routines. They succeed or fail not only in statistical models, but in bedrooms, workplaces, clinics and ordinary days.The keynote session, titled ‘Digital Biomarkers Transforming Disease Measurement in Neurodegenerative and Inflammatory Diseases’, was held by Lucy Cesnakova of Digital Medicine Society. During this talk, she dove into the existing measurement gap present in chronic disease, how digital biomarkers can help bridge this gap, and what constitutes a good digital biomarker. She highlighted that in “3 to 7 years, digital endpoints will be equal to traditional scales”, making them a “competitive differentiator” to traditional endpoints. She concluded by noting that digital endpoints could enable the prediction of fatigue before its onset, opening new opportunities for primary prevention. The keynote’s most forward-looking idea was not simply that digital endpoints may one day sit alongside traditional scales, but that they could eventually help anticipate fatigue before it overwhelms the patient. That possibility — moving from retrospective description to prediction and prevention — is where the field’s promise becomes most powerful.
The keynote session was followed by a detailed overview of the IDEA-FAST Feasibility Study (FS) and Clinical Observation Study (COS), provided by Walter Maetzler (University Hospital Schleswig-Holstein), IDEA-FAST Scientific Co-coordinator. He talked about the complexity of organizing large-scale studies, recruiting almost 2000 participants for the COS, and designing studies that encourage participants to actively contribute. The scientific scale was only one part of the achievement. The harder work was operational: coordinating across countries, navigating different systems, selecting devices, supporting participants, and building a study design that could survive contact with real life.
Participants were monitored over six months using selected digital devices and connected mobile applications, while also completing diaries and questionnaires and, in some cases, contributing biological samples. The result is a rare multimodal dataset linking clinical, biological, behavioural and digital signals with patient-reported experiences of fatigue and sleep disturbance.
Patient-centred by design, not by slogan
For the ‘People and Participants’ theme, Laura Jacobs (Parkinsons UK) and Heather Hunter (University of Newcastle), both members of the IDEA-FAST Patient Involvement and Engagement (PIE) group, provided some insight into how patients helped shape the project. Patient involvement has been part of the IDEA-FAST DNA since the project’s inception. This part of the conference showed that patient involvement in IDEA-FAST was not a decorative add-on. It shaped device selection, study design, participant communication, and the interpretation of what “burden” means in practice. The PIE group helped keep the project connected to the people whose symptoms it aimed to measure.
This introduction was followed by an interactive panel discussion titled ‘Living Patient-Centered Research, Voices from IDEA-FAST Participants‘, during which COS participants shared their firsthand experiences of taking part in the project. The panel brought a necessary dose of reality to the promise of digital monitoring. Participants generally found the devices manageable, but manageable does not mean effortless. While integrating the devices into daily life was generally considered manageable, participants highlighted practical challenges such as wearing some of the sensors, completing the electronic diary several times a day, maintaining Bluetooth connectivity, and balancing study activities with work and everyday routines. Several participants also noted that visualizing their health data improved communication with clinicians and helped them feel that their experiences were better understood and taken seriously.
Making sense of complexity
The third theme of the day focused on the Data Analysis aspect of the project. Stefan Avey (Johnson & Johnson) held a talk on the conceptual challenges of assessing fatigue, and how the team was able to stratify this multi-faceted concept into four core dimensions for analysis. Christoph Kanzler (BioGen) and Teemu Ahmaniemi (VTT) followed with a discussion on the data extraction process, and how digital measures were identified from multi-modal sensor data.
The data analysis sessions made clear why fatigue is such a difficult endpoint. It is not a single signal waiting to be discovered. It overlaps with sleep, cognition, mood, activity, disease fluctuation and context. The analytical task was therefore not only to process sensor data, but to ask what exactly should be measured, at what time of day, in which disease group, and against which patient-reported experience.
The next session of the theme dove into the results derived from the COS data analysis and the lessons learned. Clémence Pinaud (Let it Care) demonstrated that the study design was feasible, and that multimodal clinical, biological, and digital health technology data could be successfully collected and transformed into reliable digital measures. She concluded by emphasizing that tracking day-to-day changes provides the most meaningful signal for understanding fatigue.
Clémence Pinaud’s presentation offered one of the day’s most important scientific lessons: timing matters. The data suggest that day-to-day change may be more informative than broad comparisons with baseline, because fatigue is dynamic and does not always fluctuate in predictable ways. Passive monitoring and active testing can produce high-quality data, but missing data, device burden, disease-specific variation and the limits of patient-reported fatigue perception all shape what can be concluded.
This theme was concluded through a panel discussion titled ‘Interpreting Results’, moderated by Alexandra Prodan (empirica). The panelists discussed the alternative approaches they would take if they had to design a new study, from generating a more robust definition of fatigue to alternative devices. They highlighted the importance of a robust further analysis of the data we already have, stressing the fact that no new study should be initiated before working on the current dataset. They also noted the major successes of the project, from the vast datasets generated and the tight-knit consortium collaboration, to the strong patient involvement and the awareness created for fatigue.
From project to future use
The conference culminated with a panel discussion moderated by Wan-Fai Ng, titled ‘From Project to Paradigm Shift, the Future We Enabled ’, which focused on the long-term impacts of the IDEA-FAST project outcomes, and how these exploitable assets can be used to achieve impact. The final panel turned the conference from reflection to responsibility. If IDEA-FAST has built a resource of this scale, how should it be used? Who should access it? How can the consortium’s expertise be maintained? And how can the project’s outputs support better trials, better clinical conversations and, ultimately, better lives for patients? Speakers agreed that the project’s rich dataset and biorepository are among its most valuable assets, emphasizing the importance of making these resources findable and accessible to the wider research community to support further analysis, collaboration and innovation.
IDEA-FAST began with a challenge that patients know intimately, and medicine still struggles to capture: fatigue that is real, disabling and often invisible. Seven years later, the project has made that invisibility harder to ignore. It has brought patients, clinicians, researchers and industry into the same conversation; generated one of the field’s most significant digital health datasets; and shown that the future of symptom measurement will depend not only on better devices, but on better questions.
We thank everyone who joined as an attendee and all the partners who contributed to making this event a success! We are grateful for the remarkable journey we’ve had as a consortium and look forward to seeing the project’s results, collaborations, and resources continue to drive research and impact through IDEA-FAST.
