ALS Roundtable Program
Since 2019, the ALS Roundtable Program has provided a forum for candid, facilitated discussions to help shape the Association’s strategic planning efforts and find solutions to make ALS a livable disease while urgently finding cures.
All Roundtable meetings include individuals with expertise and experience from a variety of sectors, including people living with ALS, caregivers, clinicians, academic investigators, industry colleagues, and government officials, who reflect diverse points of view on ALS-related issues. The group identifies challenges faced by people with ALS and their caregivers and then recommends actions that are feasible and can significantly impact future care and treatment of the disease.
Benefits of Partnering in ALS Roundtables
Global Collaboration
All members of ALS Roundtables benefit from this collaborative forum, which promotes understanding and builds partnerships with industry peers, clinician and scientific leaders, policy makers, regulatory officials, public and private insurance representatives, ALS Association leadership, and — most importantly — people with ALS and their caregivers.
Driving Priority Programs
A seat at the Roundtable meetings offers sponsors a unique opportunity to shape and inform program-based solutions to challenges faced by the ALS community.
Informing ALS Research and Policy Agendas
Roundtable meetings inform agendas and decision making on topics that are critical to the ALS community, including clinical trial issues, regulatory and access evaluations, payment determinations for ALS therapies, and more.
Roundtable Advisory Panel
The Roundtable Advisory Panel provides input to the Association on the Roundtable program, including identifying potential topics for Roundtable meetings, and establishment and scope of work of specific topic-area working groups. The Panel is an ad hoc advisory group that consists of one representative per sponsor and convenes two to three times a year.
Roundtable Structure
Roundtable meetings are focused on a clearly defined topic that is selected ahead of time by Association staff in collaboration with the Roundtable Advisory Panel. Invited participants for each Roundtable meeting include a broad array of stakeholders and subject matter experts who can provide input on the specified topic.
People with ALS, caregivers, industry sponsors, government partners, and ALS Association staff attend each meeting either in-person of virtually. This hybrid format allows for greater participation among members of the ALS community for whom travel is challenging and promotes a high level of engagement, participation and productivity among all participants. Meetings are professionally moderated to ensure everyone is heard.
After each Roundtable meeting, an executive summary is distributed to participants. Where applicable, follow-up actions from Roundtable meetings include creation of working groups to develop tangible resources and tools that can be used by the community in addressing the topic.
ALS Roundtables Topics
Increasing the Number of, and Access to, High-Quality Clinical Trials in ALS
October 19, 2022, in-person and virtual
This meeting focused on the need to build capacity for ALS clinical trials. Expert panelists discussed key aspects of clinical trial capacity in ALS, including trial infrastructure, community navigation and successful trial completion. Meeting participants then were asked to consider the Association’s unique role in expanding and sustaining the ALS clinical research ecosystem, identifying feasible and impactful actions to achieve the goal of more, better and faster clinical trials.
Developing Action Plans to Advance Inclusion in ALS Diagnosis, Care and Research
April 27, 2022, in-person and virtual
This meeting focused on the critically important topics of diversity, equity and inclusion (DEI) and how they intersect with the Association’s goal of making ALS a livable disease. During the Roundtable, participants increased their understanding of DEI and provided input on an action plan to promote inclusion in ALS diagnosis, care and research. These discussions highlighted multiple important themes and garnered recommendations for the Association to consider as it pursues actionable efforts to advance inclusion in all aspects of combatting ALS.
Strategic Priorities for ALS: A Community Discussion
November 3, 2021, virtual
During this meeting, the Association presented its goal of making ALS livable while urgently finding cures, with a special focus on the Association’s research strategic plan. Participants, which included representatives from industry, government and non-profits and people with ALS and caregivers, provided feedback on research goals and strategies. This input was leveraged to refine the Association’s research priorities and identify opportunities for collaboration across the ALS ecosystem.
Access to Essential Care, Services, and Supports
May 6–7, 2021, virtual
This meeting focused on improving access to essential care, services and supports for people living with ALS and their caregivers. As part of the discussion, participants shared the challenges and gaps they experienced when accessing clinical care and care services (e.g., in-home non-medical care), as well as physical supports (e.g., durable medical equipment and home modifications) and non-physical supports (e.g., financial, mental and emotional). Experts also gave a comprehensive overview of the different types of insurance and coverage, how people access them and how they are regulated.
During small group sessions, participants began to prioritize ideas and actions to move toward greater consistency of care across coverage models and federal programs. Discussions also included the development of an ALS disease journey map, which is intended to provide information about what to expect as the disease progresses and define key decision points, helping to prepare and empower people with ALS as they are faced with making critical decisions.
Decreasing ALS Complications
November 18 and 19, 2020, virtual
This meeting leveraged a novel analysis of Medicare claims data to better understand the types of complications and issues people living with ALS have confronted. The Roundtable discussion focused on approaches to reduce medical complications associated with ALS, such as pneumonia, bedsores, pain, and discomfort. Outcomes from this meeting included developing efforts to track admissions to ER and to the hospital for people living with ALS to help guide interventions to intervene/decrease complications.
Reducing Time to Diagnosis
April 23 and May 13, 2020, virtual
The ALS Association convened its first-ever virtual ALS Roundtable and mapped out key challenges and solutions for reducing time to diagnosis for people with ALS. This issue was a priority identified at the Association’s March 2019 Roundtable. Outcomes from this meeting included establishment of two working groups – one focused on reducing time to diagnosis and one on genetic testing and counseling. Products that emerged from those efforts included a new thinkALS early diagnosis guide for clinicians (https://www.als.org/thinkals), a consensus statement on the benefits of timely diagnosis , a genetic testing and counseling awareness and education campaign, and a discussion guide about ALS genetics.
Access to New Therapies
October 28, 2019, Washington, D.C.
This meeting zeroed in on ways to ensure that people with ALS have access to future drug therapies. We worked together to build a foundation from which the community ensure rapid adoption of new treatments for people with ALS. Roundtable participants agreed that there is a critical need to reduce current timing between regulatory approval of a new therapy and access to treatment for people with ALS. We collectively identified and prioritized challenges around coverage criteria, value, financial burden, authorization processes and administrative burden, and benefits navigation. Outcomes of this meeting included an ALS Focus survey centered on the insurance needs and financial burdens to better understand gaps in insurance coverage and subsequent financial impacts on families. The Association also forged a partnership with the Patient Advocate Foundation (PAF) to help people with ALS to access care and treatments recommended by their doctor.
Setting ALS Association Strategic Priorities
March 29, 2019, Washington, D.C.
In preparation this meeting, the ALS Association surveyed participants from across the ALS ecosystem to identify priority topic areas for community focus in the near term. The top three topics from the survey were: Improving Time to Diagnosis, Alleviating Caregiver Burden and Enhancing Home Health became the focal points for the Roundtable agenda. Outcomes of this meeting provided input for the Association’s upcoming ALS Focus surveys and strategic planning efforts, along with identifying topic ideas for the next several Roundtable meetings.
Turning Roundtable Discussions into Action
Following the Roundtable community discussions, the Association has convened a number of working groups to delve deeper into specific topics and develop feasible solutions that will benefit the ALS community.
Current Working Groups:
- Inclusion in ALS Diagnosis, Care and Research
- Clinical Trial Capacity
Past Working Groups:
- Increasing Clinical Trial Enrollment
- Time to Diagnosis
- Genetic Testing and Counseling
- ALS Patient Journey Map
Thank you to our Roundtable Sponsors!
The ALS Association is so thankful for the support of our valued industry partners to help shape our strategic planning efforts to continue identifying strategies that will impact our mission towards our goal to make ALS livable by 2030 while urgently finding cures.
