Initiative aims to improve ALS research and increase access to clinical trials

Two amyotrophic lateral sclerosis (ALS) centers are supporting an initiative to accelerate and improve ALS research.

The Acceleration Centers of Enrollment (ACE) initiative, led by the Les Turner ALS Center at Northwestern Medicine and the Sean M. Healey & AMG Center for ALS at Massachusetts General Hospital, will work to improve access to clinical trials, expanded access protocols, and non-therapeutic research studies.

“We are thrilled to partner with the Healey & AMG Center for ALS to launch this exciting and important new initiative,” said Laura Freveletti, CEO of the Les Turner ALS Foundation, which helped establish the Les Turner ALS Center, in a foundation press release. “Clinical trial participants deserve our utmost gratitude, and this program will pave the way for better treatments and longer, more fulfilling lives for ALS patients.”

The foundation will fund the initiative together with ALS One and an anonymous donor.

“ALS One is honored to be a supporting partner” of the project, said Jennifer DiMartino, executive director of ALS One. “This innovative program will significantly increase access to important clinical trials and research studies for people with ALS.”

More participation through more resources

The ACE Initiative is led by Senda Ajroud-Driss, MD, director of the Lois Insolia ALS Clinic at the Les Turner ALS Center; Merit Cudkowicz, MD, director of the Healey Center; Sabrina Paganoni, MD, PhD, physician-scientist at the Healey Center; and Doreen Ho, MD, clinical director at the Healey Center.

The project aims to encourage faster, more efficient research through increased funding for training, staff salaries, and improved infrastructure. Researchers hope this will ultimately lead to improvements in ALS treatment and care and the discovery of a cure for the disease.

“We need transformative initiatives to change the trajectory of ALS research and treatment,” Paganoni said. “With programs like ACE bearing fruit, we are paving new paths for those who want to contribute to research and gain access to clinical trials, expanded access and other important studies.”

Supporters of the ACE Initiative hope that more efficient ALS research will give more ALS patients access to potential treatments and programs, such as the HEALEY ALS Platform Study (NCT04297683).

This trial, led by the Healey Center, is the first to test multiple investigational drugs for ALS simultaneously. The goal is to develop new therapies more quickly using a common infrastructure, which will help reduce the cost and time of drug development.

So far, seven treatments have been enrolled in the HEALEY ALS platform trial, which compares data from patients who received each experimental therapy with data from a common placebo group. The trial will continue to enroll ALS patients while new investigational drugs are selected for testing.

“The ACE initiative will serve as a model for future adaptations and contribute valuable research and information to the fight against ALS,” said Ajroud-Driss. “We are grateful for the support of our research partners as well as the ALS community for making this initiative possible.”