ALS Community Invited to Help Set Research Priorities in US

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by Mary Chapman |

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The National Institute of Neurological Disorders and Stroke (NINDS) is asking people across the amyotrophic lateral sclerosis (ALS) community to submit their preferences regarding what should be prioritized to accelerate ALS research.

NINDS, which is part of the National Institutes of Health (NIH), is seeking contributions from ALS patients, families, caregivers, advocates, investigators, and clinicians. The agency’s overarching goal is to identify what the community holds as its highest priorities for research into more effectively diagnosing, treating, managing, and preventing ALS.

More specifically, the federal agency is seeking input regarding perceived knowledge gaps, research opportunities, and priorities in clinical trials, it reported in an agency announcement.

To ensure being considered, responses must be received by Feb. 11. Visit this site to participate.

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The strategic planning process to determine NINDS’ research priorities starts with this request for information, known as an RFI.

NINDS is particularly interested in responses that cover opportunities for understanding the genetic, molecular, cellular, or neural pathway changes that cause ALS or influence disease progression; strategies for translating discoveries into treatments; important factors to consider when conducting clinical research; and the biggest challenges for patients and caregivers, its announcement noted.

Other areas of interest include potential interventions to improve patients’ and caregivers’ life quality, such as technologies or therapies aimed at easing ALS symptoms; opportunities for collaborations that could speed the discovery of effective approaches for the diagnosis, treatment, management, prevention, or cure of ALS; and notice of inequities that limit patient and caregiver participation in the research process.

Responses will be complied by working groups of scientists, clinicians, advocates, and patients. Identified areas will be used to set priorities for advancing study of the biology behind ALS, translating fundamental research into therapy candidates, optimizing ALS clinical trials, improving patients’ quality of life, and finding opportunities for collaborations and partnerships.

Working group findings will be presented at public hearings on Oct. 26–27. During the free hearings, there will be opportunities for public input.

After the hearings, the working groups may amend their research priorities based on that input.

Priorities noted will then be posted online for public comment before being presented to the National Advisory Neurological Disorders and Stroke Council (NANDSC) for approval. Among other responsibilities, the NANDSC conducts a final review of all applications for NINDS research grants, training grants, and career development awards.

While responses may be submitted anonymously, they will not be confidential. They might be shared on an NIH website and could be included in reports or other publicly accessible outlets.

Those wanting more information are asked to detail a request in an email to [email protected]