Christian Rubio
Executive Director & Head of Development EverythingALS
Christian Andrés Rubio is the Executive Director of EverythingALS, where he oversees the organization’s pre-competitive biopharma consortium in ALS, advancing the development of clinical tools and endpoints based on real-world data and digital biomarkers to accelerate ALS research and improve care. Operationally, he leads regulatory engagement, community programming, and stakeholder communications, bringing together diverse stakeholders to enable meaningful progress in areas of unmet need.
Over the last 20 years, Christian has held leadership level roles in patient engagement and digital strategy in biotech, nonprofit, and health tech organizations, developing patient-centered programs to drive engagement in clinical trials and commercial product launches, and pioneered strategic ventures into rare diseases with organizations such as AWS and the Chan-Zuckerberg Initiative.
Seminars
- Designing compliant, trustworthy AI in ALS: how companies balance regulatory rigor with rapid innovation in real world clinical and research settings
- Enabling hyper personalization through AI and digital biomarkers, using continuous, multimodal data to reflect individual disease trajectories rather than population averages
- Creating AI powered educational feedback loops that translate patient generated data into meaningful insights for patients, caregivers, and clinicians
- Leveraging tech enabled non profits as a deployment model, aligning patient trust, open collaboration, and mission driven AI innovation to accelerate impact in ALS
- How patient-reported outcomes, quality-of-life metrics, and digital tools are shaping trial design, endpoint selection, and real-world evidence in ALS studies
- The role of patient advocacy groups and community engagement in prioritizing unmet needs, accelerating recruitment, and informing study feasibility
- Lessons from participatory research programs highlighting patient perspectives on symptom tracking, trial burden, and therapy acceptability
- Strategies for integrating patient insights into regulatory submissions, biomarker development, and therapeutic prioritization, ensuring research translates into meaningful impact for people living with ALS
This interactive workshop will explore how clinical trial endpoints can be designed to reflect what truly matters to people living with ALS. Participants will discuss strategies for integrating patient-reported outcomes, functional measures, digital biomarkers, and quality of-life metrics into trial design. The session will highlight collaborative approaches with patient advocacy groups, lessons from ongoing studies, and regulatory considerations for demonstrating clinical meaningfulness. Attendees will gain practical insights into creating endpoints that enhance trial relevance, patient engagement, and therapeutic impact.
Key Discussion Points
- Defining endpoints that capture functional, cognitive, and quality-of-life outcomes meaningful to patients
- Incorporating patient-reported outcomes, digital tools, and real-world data into trial design
- Regulatory perspectives on patient-centered endpoints and demonstrating clinical relevance
- Collaborative models to co-design endpoints with patients and advocacy groups
