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NOT-NS-23-041- Request for Information: Soliciting Public Comment on Draft Amyotrophic Lateral Sclerosis (ALS) Strategic Plan

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 from people living with amyotrophic lateral sclerosis (ALS), families, caregivers, advocates, scientists, clinicians, and the broader community on the most important knowledge gaps and promising research opportunities that will lead to the discovery of effective interventions for the diagnosis, treatment, management, prevention, or cure of ALS.

Background

The National Institute of Neurological Disorders and Stroke (NINDS), part of the National Institutes of Health (NIH), is initiating 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 is beginning with this public RFI. Responses to this RFI will be shared with working groups of scientists, clinicians, advocates, and people living with ALS who will use this information, along with their own knowledge of the research landscape, to develop priorities for accelerating research on the biology behind ALS, translating fundamental research into potential ALS therapies, optimizing ALS clinical research, improving the quality of life for persons living with ALS through research, and identifying opportunities for collaborations and partnerships. These working groups will present their findings at a meeting on October 26 and 27, 2022, which will be free, open to the public, and will include opportunities for public input on the priorities. After the meeting, the working groups may modify the research priorities to take into account the public input. The research priorities will then be posted online for public comment before they are presented to the National Advisory Neurological Disorders and Stroke Council for approval.

Information requested

The NINDS is soliciting information on the most important knowledge gaps and promising research opportunities that will lead to the discovery of effective interventions for the diagnosis, treatment, management, prevention, or cure of ALS. Responses are encouraged to include input on the following topics:

• Opportunities for understanding the genetic, molecular, cellular, or neural pathway changes that cause ALS or influence disease progression
• Strategies for translating discoveries into therapies
• The most important factors to consider when conducting clinical research
• Biggest challenges for people currently living with ALS and their caregivers
• Interventions, such as technologies or symptomatic therapies, that will improve the quality of life of people living with ALS and their caregivers
• Opportunities for collaborations and partnerships that will accelerate the discovery of effective interventions for the diagnosis, treatment, management, prevention, or cure of ALS
• Inequities, if any, that limit the ability of people living with ALS, their families, and caregivers to participating in the research process

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 2/11/2022. Responses may be submitted after this date, but we cannot guarantee full incorporation.

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]