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Help build a more effective and patient-centered clinical trial system in ALS

Register now!

The I AM ALS Action Summit will be held virtually over the course of two days. Participation is capped at 50 attendees. Please register now to ensure your seat is reserved for the following two sessions:

  • Wednesday, March 2: 12pm-3pm ET (9am-12pm PT)
  • Thursday, March 3: 12pm-3pm ET (9am-12pm PT) 

More about The Action Summit

In 2019, I AM ALS conducted a national survey to assess ALS patient knowledge of and barriers to enrollment in clinical trials. The results represent the lived experiences of hundreds of people and illuminate real issues with the clinical trial system for ALS, which manifest in long enrollment periods, high dropout rates, a general lack of knowledge and understanding about clinical trials, and avoidance of trials by some people living with ALS. The results of this survey and our conversations with a range of stakeholders have revealed an urgent need for:

  • Improved knowledge and understanding of clinical trials in ALS by clinicians and people affected by ALS
  • More patient-centric trial designs and practices, and
  • Improved diversity in clinical trial access and participation (race, age, type of ALS, geographical location, etc.) 

In response to these concerns, I AM ALS will host a series of collaborative Action Summits and follow-on activities to engage the entire ALS community in improving the ALS clinical trial experience for people living with ALS and their caregivers. The initial I AM ALS Action Summit will focus on developing actionable solutions related to:

  • Clinical trial recruitment and access
  • Diversity in clinical trials 
  • Standardizing patient-centric clinical trial design and operations 

The Action Summit will gather and engage key stakeholders in the ALS community, including people living with ALS, loved ones and caregivers, physicians, clinical research sites, advocacy organizations, biopharma allies and key government stakeholders. Together, participants will co-create actionable solutions to improve clinical trial access and patient-centered practices. Our bold goal in this endeavor is to spur a culture shift in ALS care focusing first on providing widespread access to investigational treatments to those living with ALS for those who want it.

We welcome participants that 

  • Have a strong existing knowledge of the ALS Clinical Trials Landscape and ideas for how to solve prevalent challenges 
  • Have a strong desire to work with highly informed members of the ALS advocate community (people living with and affected by ALS) to ensure patient-centered practices and experiences in clinical trials 
  • Have decision-making power or strong influence within the ALS community

Expectations of participation

  • Participants have been invited based on qualifications
  • All participants are expected to be present for the entire event (6 hours over 2 days) and to be active contributors to discussions and solution ideation
  • All participants should come prepared to discuss solutions to previously identified challenges in clinical trial recruitment and processes

Urgency

Over the last two decades, the scientific community has made tremendous progress in revealing the underlying causes of ALS. For instance, while only two genes were known contributors before 2000, upwards of fifty genes are now known to play a role in the disease. We also know considerably more about what leads to motor neuron death in ALS, which has revealed a number of new and promising drug targets. As pre-clinical advancements are translated into new clinical approaches to ALS treatment, it is more important than ever that the ALS community collaborates to ensure that the ALS clinical trial system is set up for success. 

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