Since 2022, the Ametris Digital Data Summit (ADDS) has brought together researchers and experts from across the multidisciplinary field of digital health to address opportunities and challenges facing the broader adoption of digital measures in drug development. Inspired by the productive conversations and ideas shared at previous events, our team decided to add a new element to the annual meeting held in February of 2025 – the ALS Workshop.
 

Background: ALS Pre-Conference Workshop

While many researchers have demonstrated the potential of digital measures, there is still a substantial gap to their use as primary or key secondary endpoints in Amyotrophic Lateral Sclerosis (ALS) clinical trials. To make progress towards this goal, ADDS 2025 included a focused pre-conference workshop with global key opinion leaders in ALS trial design, including participants from Ametris (formerly ActiGraph), North Star ALS Consortium Patient Education, ALS Therapy Development Institute (ALSTDI), Critical Path Institute (C-Path), Trace Neuroscience, Massachusetts General Hospital, and the University of Queensland.

Workshop attendees gathered to discuss open research and methodological questions, needs and barriers in ALS clinical development, and current evidence gaps with the goal of developing an action plan, timeline, and establishing collaborative efforts. The agenda for the workshop included presentations, roundtable discussion, and whiteboard activities that were structured into three thematic sessions:  

1) Current Measurement Tools and Clinical Trial Use Cases  

2) Novel Digital Tools and Industry Adoption 

3) Evidence Generation and Regulatory Readiness

Poster Presentation at NEALS 2025 

After the productive discussion at the ALS Workshop during ADDS 2025, our team knew we wanted to share the outcome of the discussion with a broader audience. I had the opportunity to work with participants from the workshop to create and share a poster, Accelerating ALS Drug Approval using Digital Health Technologies: Findings from the ADDS 2025 ALS Workshop, at the Northeast ALS (NEALS) Annual Meeting October 7-10, 2025, in Clearwater, Florida. You can view a full size copy of the poster here. 

NEALS brings together researchers, clinicians, industry leaders, government and foundation partners, and individuals with lived ALS experience to discuss the latest advancements in ALS research and treatment. We are grateful for the opportunity to share the outcomes from the ADDS ALS Workshop at this event since there is a strong focus on member initiatives, potential new therapies, and collaboration among the ALS community. 

Accelerating ALS Drug Approval using DHT: Findings from the ADDS 2025 ALS Workshop

Key Workshop Findings

The poster includes the results of an ALS patient perspective survey; understanding and incorporating the patient’s perspective is a critical element of progressing digital measures. The survey demonstrates that patients have a high degree of willingness to incorporate actigraphy into their daily lives and to wear one or more devices, especially if it would reduce in-person clinic visits. Comfort was the biggest concern about using a wearable device, but over one third of patients reported no wearability concerns, affirming the feasibility and acceptability of actigraphy from a patient perspective. 

We also summarize and share main elements of the workshop discussion that are key to progressing digital measures in ALS clinical trials, including –  

• Evidence generation requirements and regulatory readiness 

• Current measurement tools, their limitations, and wish list characteristics for future measures 

• Proposed stakeholder contributions across the digital biomarker development landscape 

How Can I Get Involved in ADDS? 

Registration is now open for ADDS 2026 annual meeting, which will take place on February 23-25, 2026 in Atlanta, GA. You can learn more about the venue, speaker details, and agenda coming soon at the event homepage: https://adds.ametris.com/2026/atlanta/home  

In addition to attending, there are new opportunities for researchers to share their research at ADDS! The Scientific Poster Session is always a highlight of ADDS events, in large part due to the high quality of the research shared. That’s why at ADDS Atlanta 2026, there will be an opportunity to give a short oral presentation (5-7 minutes) for select abstracts.  

The deadline to submit abstracts has been extended to Sunday, November 16th, 2025. We hope you consider sharing your research! You can review the submission guidelines here: https://adds.ametris.com/2026/atlanta/scientific-poster-session  

You can also learn more about the types of topics discussed at ADDS in this summary of ADDS Basel 2025 from our Chief Scientific Officer, Christine Guo: Driving Collaboration to Accelerate DHT Adoption: Reflections from ADDS Basel 2025 

Or hear what attendees have to say about ADDS in this short video!