Initiative aims to improve ALS research, clinical trial access
Northwestern, Mass General teams will lead venture
Two amyotrophic lateral sclerosis (ALS) centers are backing an initiative aimed at accelerating and improving 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 increase 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,” Laura Freveletti, CEO of the Les Turner ALS Foundation, which helped launch the Les Turner ALS Center, said in a foundation press release. “Clinical trial participants deserve our utmost gratitude, and this program will pave the way for better treatments and longer, richer lives for those living with ALS.”
The foundation, along with ALS One and an anonymous donor, will fund the initiative.
“ALS One is honored to be a support partner” of the venture, said Jennifer DiMartino, executive director of ALS One. “This innovative program will significantly enhance access to critical clinical trials and research studies for people living with ALS.”
Increased participation through more funding
The ACE initiative will be 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, clinic director at the Healey Center.
The project is aimed at promoting faster, more efficient research through increased funding for training, staff salaries, and improved infrastructure. Researchers hope that ultimately this will improve ALS treatment and care and advance efforts to find a cure for the disease.
“We need transformative initiatives to change the trajectory of ALS research and care,” Paganoni said. “With programs like ACE coming to fruition, we are forging new paths for those who desire to contribute to research and gain access to clinical trials, expanded access and other important studies.”
The ACE initiative backers hope that improving efficiency in ALS research will give more ALS patients access to potential treatments and programs, including as the HEALEY ALS platform trial (NCT04297683).
That trial, led by the Healey Center, is the first to simultaneously test several investigational candidates for ALS, with the aim of developing new therapies faster through a common infrastructure. This is expected to help reduce the cost and time associated with drug development.
To date, seven treatments have entered the HEALEY ALS platform study, in which data from patients given each experimental therapy are compared with data from a shared placebo group. The trial will continue to enroll ALS patients as new investigational products are selected to be tested in the study.
“The ACE initiative will serve as a model for future adaptations and contribute invaluable research and information to the fight against ALS,” Ajroud-Driss said. “We are grateful for the support of our research partners, as well as the ALS community for making this initiative possible.”
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