The ALS Association recently filed comments with the National Institute of Health (NIH) to provide the National Advisory Neurological Disorders and Stroke Council and their Council Working Group with constructive feedback on the development of the NINDS 2022 Draft ALS Strategic Plan.
We encourage NIH to keep people living with ALS central in development of their strategic plan. We would like them to focus on funding research and studies that offer meaningful outcomes and improve the quality of care for people living with ALS with deliberate speed and efficiency.
This plan, which was included in the ACT for ALS, intends to maximize the discovery of ways to diagnose, treat, prevent, and eventually cure ALS. It has the potential to help transform ALS science and care, and help make ALS a livable disease. To maximize the transformative potential of NIH research in ALS,
We laid out general principles beyond research priorities to emphasize the need to focus on quality of care, how care is delivered.
- Consider the timeliness of research efforts with the timescales of people living with ALS.
- Consider the workforce and infrastructure issues that underline ALS science that maximize speed, access and efficiency.
- Focus research spending that offers meaningful improvements for people living with ALS today.
- Focus on prevention strategies on risk factor validation including epidemiology and genetics.
We are grateful that NINDS is progressing on the development of its strategic plan and we look forward to further engagement with the NIH and opportunities to accelerate the search for treatments and cures for ALS.
Read our full comments to NIH here.