The ALS Research Collaborative (ARC) Study is the most comprehensive and longest running translational research study in ALS. Through the ARC, researchers at ALS TDI partner with people with ALS around the world to share and gather data to better understand the disease. ARCparticipant Phil Green shares how ARC data helped him track his disease progression while he was participating in an ALS clinical trial.
As an athlete for most of my life, I have been in tune with my body and able to notice differences due to a change in my training or injuries resulting from a game. When I was diagnosed with ALS in August of 2018, I knew how important it would be to keep in tune with the changes in my body as my disease progressed.
Shortly after my diagnosis, I was fortunate enough to get connected with Augie and Lynne Nieto, founders of Augie’s Quest to Cure ALS, who introduced me to Dr. Steve Perrin from the ALS Therapy Development Institute (ALS TDI). I learned about the great things that ALS TDI was doing and I became very interested in their ALS Research Collaborative (ARC) Study. I learned that through ARC, ALS TDI partners with people with ALS to gather data on voice, movement, lifestyle, personal medical and family medical histories, genetics, biomarkers, and patient cell biology. I also learned that as a participant I would able to view my own data via a secure online portal. I decided to enroll because the ARC Study seemed like a better way for me to consistently and accurately monitor my disease progression. My clinic visits were once every 3 months but every month ARC was collecting data to monitor my disease.
During this same time, I was exploring clinical trial options and recognized that the ARC Study could provide me with insights as to whether or not a therapy was having a positive effect on my disease progression. As it all worked out, I was selected to participate in the BrainStorm Phase 3 NurOwn Trial. I was also able to travel to Boston and officially enroll in the ARC Study at the same time as my 3-month observation period started for the Brainstorm trial.
The BrainStorm trial is a double-blind randomized 50/50 placebo trial, meaning that there was a 50% chance that I would receive actual treatment and a 50% chance that I would be in the placebo group. Being double-blind means that neither the company nor the trial site would know which group I was randomly assigned to. For these reasons, it was even more critical for me to look to the ARC Study data to help me deduce if I was getting treatment, and if so, was it having a positive effect on my progression. Understanding this, I made certain to do my monthly ARC exercises diligently and purposefully.
We won't know for certain whether I actually received treatment or placebo until the trial is completely finished at the end of 2020, but my ARC data during my time in the trial shows that my progression was effectively paused for the 9 months or so after my first stem cell transplant. From the perspective of someone living with ALS, that has very little options for effective treatments, there is value in having access to data that shows if a therapy, supplement, or other intervention is helping slow (or even accelerate) your disease progression. This made me feel as if I had some control over a disease that offers very little control and I am very thankful for that.
Learn More About the ALS Research Collaborative Study
To learn more about ALS TDI’s ALS Research Collaborative Study, visit www.als.net/arc.