In January of 2022, the National Institute of Neurological Disorders and Stroke (NINDS), part of the National Institutes of Health (NIH), initiated a strategic planning process to identify the highest priorities for research that will lead to the discovery of effective interventions for the diagnosis, treatment, management, prevention, or cure of ALS. The strategic planning process began with a public Request for Information (RFI) that was open until February 11, 2022. RFI responses were shared with a working group of the National Advisory Neurological Disorders and Stroke (NANDS) Council, which included scientists, clinicians, advocates, people living with ALS, caregivers, and people with genetic risk of developing ALS. The NANDS Council Working Group used this information, along with their own knowledge of the research landscape, to develop research priorities in five areas:
These working groups presented their finding at a public workshop on October 26 and 27, 2022, which was free and open to anyone interested in ALS research priorities and included opportunities for attendees to provide input on the priorities. After the meeting, the NANDS Council Working Group modified the research priorities to take into account the workshop discussions. NINDS is currently seeking public comment on the Draft ALS Strategic Plan before it is presented to NANDS Council for approval on February 1-2, 2022.
Information requested The NINDS is soliciting feedback on the Draft ALS Strategic Plan (pdf, 1776 KB).
The NINDS seeks comments on any or all of the priorities across the five key areas articulated in the Draft ALS Strategic Plan (pdf, 1776 KB), including potential benefits, drawbacks or challenges, other priority areas for consideration, or any other comments.
NINDS encourages organizations (e.g., patient advocacy groups, professional organizations) to submit a single response reflective of the views of the organization or membership as a whole.