100th Patient Enrolled in World’s First Precision Medicine Program for ALS
Posted: April 14, 2015 in Other News
ALS Therapy Development Institute
CAMBRIDGE, MA – The ALS Therapy Development Institute announced that it has enrolled the 100th patient in its Precision Medicine Program (PMP). This milestone marks a significant step in the program, which after now includes over 500 people interested in participating and 280 pre-screened for enrollment. Nearly 200 additional people living with ALS (PALS) or healthy volunteers have been scheduled for participation before the end of the year. This program is the first of its kind to be created for ALS and includes multiple aspects unique to the field of precision medicine specifically aimed to discover and develop treatments for ALS.
The Institute is providing all participants with access to the data via a secure online portal, where they can monitor their health status by viewing changes in motion tracker and speech recording data, and track the data generated from the biological samples. Data obtained by the Precision Medicine Program will be instrumental for identification of the subtypes of ALS, as well as for the discovery and clinical development of therapies for ALS.
“Each of the people enrolled in this program are true trailblazers in my opinion. Their effort through the Precision Medicine Program adds in a huge way to our already hyper-focused and data-driven efforts to develop ALS treatments. The patients and volunteers in the Precision Medicine Program are standing right there on the edge of scientific discovery together with us at the Institute as we share the goal of urgently finding ways to get at this disease in a meaningful way,” said Steve Perrin, Ph.D., Chief Executive and Scientific Officer of the ALS Therapy Development Institute.
The Institute began planning its Precision Medicine Program in 2013, and announced a call for volunteers this past summer. The Institute’s enrollment was boosted by the social media phenomenon, the ALS Ice Bucket Challenge. Nearly $4 million was donated directly to the Institute, and every dollar was assigned directly to ALS research, including $1 million to the Precision Medicine Program, allowing it to expand enrollment from 25 to 300 people.
The Institute is currently working to expand the program further to include more patients and volunteers, and expects to make additional announcements regarding that in the coming months. For more information on the 100thpatient and others in the Precision Medicine Program, please visit www.als.net.
