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NOT-NS-22-056 - Request for Information: Soliciting Input on Research Priorities for Amyotrophic Lateral Sclerosis (ALS)

Issued by

National Institute of Neurological Disorders and Stroke (NINDS)

Purpose

Purpose 

The purpose of this time-sensitive Request for Information (RFI) is to seek input on the Draft ALS Strategic Plan from people living with amyotrophic lateral sclerosis (ALS), families, caregivers, people with genetic risk of ALS, advocates, scientists, clinicians, and the broader community. 

Background 

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: 

1. Accelerating research on the biology behind ALS 

2. Translating fundamental research into potential ALS therapies  

3. Optimizing ALS clinical research 

4. Optimizing the quality of life for persons living with ALS and their caregivers 

5. Identifying opportunities for collaborations and partnerships 

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 this 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, which can be found at: https://www.ninds.nih.gov/about-ninds/strategic-plans-evaluations/strategic-plans/amyotrophic-lateral-sclerosis-als.   

The NINDS seeks comments on any or all of the priorities across the five key areas articulated in the Draft ALS Strategic Plan, including potential benefits, drawbacks or challenges, other priorities for consideration, or any other comments. 

NINDS encourages organizations (e.g., advocacy groups, professional organizations) to submit a single response reflective of the views of the organization or membership as a whole. 

How to Submit a Response 

Responses to this RFI must be submitted electronically using the web-based form found here: https://www.ninds.nih.gov/ALS-RFI.  

To ensure full consideration, your responses must be received by 12/16/2022. 

Responses are voluntary and may be submitted anonymously. Responders are advised that the U.S. Government is under no obligation to acknowledge receipt of the information received or provide feedback to respondents with respect to any information submitted. Submitted information will not be considered confidential. Do not include any proprietary, classified, confidential, trade secret, or sensitive information in your response. Responses may be shared publicly on an NIH website, and the provided information may appear in summary form in reports or other publicly accessible resources. Please do not include any personally identifiable or other information that you do not wish to make public. The U.S. Government will use the information submitted in response to this RFI at its discretion. 

This RFI is for information and planning purposes only and shall not be construed as a solicitation, grant, or cooperative agreement, or as an obligation on the part of the U.S. Government, the NIH, or individual NIH Institutes and Centers to provide support for any ideas identified in response to it. The U.S. Government will not pay for the preparation of any information submitted or for the U.S. Government’s use of such information. No basis for claims against the U.S. Government shall arise as a result of a response to this RFI or from the U.S. Government’s use of such information.  

Inquiries

Please direct all inquiries to:

ALS Strategic Planning Team

National Institute of Neurological Disorders and Stroke

Email: [email protected]