FNIH launches public–private partnership to accelerate ALS research

Today, May 21, 2024, the Foundations for the National Institutes of Health (FNIH) launched another public–private through its Accelerating Medicines Partnership (AMP) program for amyotrophic lateral sclerosis (ALS). The AMP ALS program will enhance multiple areas of ALS research, including diagnostic tool development, biomarker discovery, and improved treatments.

According to Johns Hopkins Medicine, ALS is a motor neuron disease that causes the degeneration of nerves in the spinal cord and brain. The condition is characterized by multiple symptoms, including muscle twitching and cramping, loss of motor control, tripping, falling, fatigue, and slurred speech. Later stages of the disease may result in trouble breathing, difficulty swallowing, and paralysis.

“ALS gradually robs people of their ability to walk, talk, eat  and eventually breathe. Patients can’t wait, given the typical survival time of two to five years after diagnosis,” said Julie Gerberding, MD, MPH, President and CEO of the FNIH, the organization’s press release. “AMP ALS will help define sorely needed diagnostic and treatment targets and bring hope to patients and their families who are faced with this challenging disease.”

Combined efforts from the National Institute of Neurological Disorders and Stroke (NINDS) at the National Institutes of Health (NIH), the Food and Drug Administration (FDA), Critical Path Institute (C-Path), Abbvie, the ALS Association, ALS United, the Association for Frontotemporal Degeneration, Lilly, Mitsubishi Tanabe Pharma America, QurAlis, and Target ALS, and other stakeholders will focus on critical areas of ALS research.

The partnership will develop and launch a cloud-based, open-access knowledge portal that acts as a centralized location for accessing current and future ALS datasets. The database will help guide future research.

Some researchers in the AMP ALS program will focus on identifying and validating biomarkers, while others will work on developing or modifying clinical outcome assessments.

“Working collaboratively, through AMP ALS, the partners can advance efforts to understand what triggers ALS and discover new targets for effective treatments, as well as identify biomarkers that can be used to predict whether promising interventions have the intended effects in people,” added Walter Koroshetz, MD, Director of NINDS. “Most of all, we are grateful for the significant contributions of people with lived experience who provided so much time and effort into the development of this program, and we greatly appreciate their continued participation.”