In November and December, we sought your questions and comments on draft recommendations for research priority areas that will lead to the discovery of effective interventions for the diagnosis, treatment, management, prevention, or cure of ALS.

Strategic Plan Draft Priorities

A working group of the NINDS Advisory Council was convened to explore the landscape of ALS research and draft priorities for a Strategic Plan. This working group is comprised of a Steering Committee and 5 topic-specific working groups. The topics covered include (order does not indicate priority):

  • Accelerating research on the biology behind ALS
  • Translating fundamental research into potential ALS therapies
  • Optimizing ALS clinical research
  • Optimizing the Quality of Life of Persons Living with ALS and Caregivers through research
  • Identifying opportunities for collaborations and partnerships

ALS Strategic Plan Workshop

On October 26 and 27, 2022, the National Institute of Neurological Disorder and Stroke (NINDS) held a virtual workshop on the development of an ALS Strategic Plan.  The Plan will identify the highest priorities for research and action toward the discovery of effective interventions for the diagnosis, treatment, management, prevention, or cure of ALS.

The two goals of the October Workshop were: 1) to present to the public the current draft of the Plan and 2) to obtain feedback from the community to further inform the recommendations. The Draft Strategic Plan has been updated based on questions, comments, and discussion of the workshop.

We encourage anyone invested in or impacted by ALS to review the workshop sessions, available on our Agenda page.  You can visit the NINDS ALS Strategic Planning webpage to learn more about the overall process.

How can I share feedback?

The NINDS sought feedback throughout the strategic planning process via two Requests for Information (RFI) and during an open workshop with multiple opportunities for public comment and Q & A.

Comments and questions on all of the priorities, including potential benefits, drawbacks or challenges, other priority areas for consideration, or any other ideas were received and reviewed by the ALS Strategic Plan Working Group.

Why do we want and need your insight and how will we USE the information?

Your comments may help shape recommendations for research and action on ALS. A Steering Committee and topic-based working groups comprised of scientists, clinicians, advocates, people living with ALS, and their caregivers have been working to develop recommendations for research and action on ALS. Guidance and comments from people with lived experience of ALS and ALS expertise will help this working group of the NINDS Advisory Council prioritize the most critical areas for inclusion in a strategic plan.  See the home page for more on the timeline of the process and opportunities for your comments to shape the recommendations.