The ALS Association

ALS Ice Bucket Challenge Progress

The ALS Association Awards $500,000 to the NEALS Consortium for Its TREAT ALS™ Clinical Trials Network

August 13, 2013

For the sixth consecutive year, The ALS Association is pleased to announce its support of the Northeast ALS Consortium (NEALS), the largest consortium of ALS clinical researchers in the world. This year’s award totals $500,000 and will fund new initiatives and ongoing programs that will increase the quality and efficiency of clinical trials for ALS.

The grant will support the work of NEALS in its collaboration with The Association’s Translational Research Advancing Therapy (TREAT) ALS program, a diverse portfolio of ALS research to find treatments and a cure for ALS.

“We are very pleased to continue and extend support for ALS clinical trials research through the collaboration between NEALS and TREAT ALS,” said Lucie Bruijn, Ph.D., Chief Scientist for The Association.

New initiatives funded this year include:

--Exploring the feasibility of a centralized Institutional Review Board (cIRB) for NEALS clinical trials. An IRB is responsible for protecting patient safety and autonomy during a clinical trial. Studies have shown that a centralized IRB can perform the same functions while greatly reducing the start-up time for a trial. NEALS will pursue the possibility of establishing a cIRB for its trials, in order to reduce delays in beginning trials for new drugs. They will also pursue efficiencies in contract development and trials site reporting, both important aspects of running efficient clinical trials.

--Videotaping the annual Clinical Research Learning Institute (CRLI) in an effort to reach a broader patient audience. The CRLI is an intensive program dedicated to educating patients and caregivers on clinical research and therapy development while also empowering them to act as advocates for ALS research. Providing web-based access to the program will offer patients and caregivers unparalleled access to this high-quality and actionable information.

--Creation of a Global ALS Patient Identifier. Using technology from the National Institutes of Health, NEALS will create a unique ID for each ALS patient who enters a clinical trial. This will protect patient identity while enhancing research collaboration. Researchers will be able to share data and biofluids without compromising patient privacy.

--Development of NeuroBANKTM, a platform for collaboration, research, education and best clinical practices development utilized by the ALS clinical and research community. NeuroBANK is poised to become central repository for clinical research data in ALS, greatly expanding the ability of researchers to share data and speed research. Samples collected through this resource are available for researchers world-wide.

"The ALS-CRLI has now helped 60 Research Ambassadors to be more effective advocates for ALS Research, thereby empowering them to speed the development of better ALS treatments. The ALS-CRLI program itself keeps getting better and better, thanks in large part to the excellent feedback we get from each graduating class,” said Richard Bedlack, M.D., Ph.D., Duke University.

In addition to these new initiatives, The Association’s support will allow continuation of multiple ongoing projects, including clinical trials recruitment, training of young investigators, and improving the quality of clinical trials through training of both Principal Investigators and Site Investigators.

Funding will also continue to support the ALS Association/NEALS Clinical Trial Expert Line, which offers a full-time staff member to answer questions and help people navigate through the clinical research information. Help is available by telephone at (877) 458-0631 during regular business hours, Eastern Standard Time, or by email at

Read the press release.

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