Share your Input on Research Priorities

The National Institute of Neurological Disorders and Stroke (NINDS), part of the National Institutes of Health (NIH), is asking for input from the ALS community as it begins to develop its first ALS Strategic Plan. You can learn more about NIH/NINDS and the importance of this opportunity here.

Having trouble getting started? See the below list of high-level community-informed priorities in ALS research to spur your thinking. We encourage you to copy, adapt and/or expand upon any or all of these to fit your specific viewpoint. Be sure to respond to the Request for Information (RFI) here by this Friday, February 11.

  • Increased research for those at higher risk of developing ALS (namely, carriers of gene variants and military veterans) 
  • Explore approaches to disease prevention and pre-symptomatic care  
  • Ensure better coordination of ALS research efforts within NIH (e.g. build strong lines of communication between all institutes that fund or conduct ALS research, allowing for synergistic collaboration and avoiding unnecessary duplication of efforts) 
  • Improve research coordination between ALS and other neurodegenerative diseases with overlapping symptoms, genetic associations, etc.
  • Initiate a comprehensive natural history study that includes widespread whole genome sequencing and analysis in those living with and at risk for developing ALS 
  • Explore innovative and more patient-centric clinical trial designs (a la the PaCTD rating criteria
  • Explore novel outcome measures for clinical trials (improved measures of function, biomarkers, remote monitoring, etc)
  • Expand the number and reach of clinical trials, including a clinical trial “parallel track”/expanded access program for individuals who are not eligible for traditional clinical trials
  • Invest in strengthening partnerships with the ALS community, especially those living with and directly impacted by ALS
  • Serve as a convener and thought leader to strengthen partnerships and collaborations with the rest of the ALS research community (academic institutions, research institutes, medical centers, biopharma, other government and non-government funders, etc.) 
  • Ensure a robust pipeline of ALS researchers (e.g. through ALS research training grants)
  • Invest in better understanding and response to health disparities in ALS research and care
  • Invest in research and technology development to improve the quality of life for people living with and impacted by ALS

Read I AM ALS’ submission to the NINDS RFI.

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