I AM ALS Empowers Patients With Launch of Clinical Research Dashboard
For Immediate Release: August 14, 2020
Media Contact: Theresa Garner, [email protected]
ALS Signal provides a comprehensive view of clinical trials happening across the globe.
WASHINGTON, DC — I AM ALS debuted the launch of ALS Signal: Clinical Research Dashboard. I AM ALS is a patient-led, patient-centric movement revolutionizing how to find cures for terminal rare diseases. ALS Signal is a new global resource created by dedicated patients, caregivers and advocates to offer a user-friendly way to discover current ALS-related clinical research, allowing for efficient access to information that is vital to the ongoing efforts to end ALS.
ALS Signal was made possible with the help of a dedicated team of passionate organizers committed to ensuring the ALS community is empowered to make informed decisions and attain increased access to experimental therapies if they want it.
“I AM ALS is committed to putting treatments and cures in the hands of people living with ALS as quickly as possible. Every action we take keeps that goal front and center. ALS Signal is a first-of-its-kind resource created for ALS patients and their loved ones to empower them with the information they need to understand what clinical research is being done around the world,” I AM ALS CEO Danielle Carnival said. “This community is fueled by tireless champions, primarily people living with ALS and their caregivers, who are making the changes they see needed to advance answers for this disease. I am in awe of the remarkable efforts of our Promising Therapies Team, championed by ALS Signal lead organizer Nadia Sethi.”
A key component of ALS Signal is the unique Patient-Centric Trial Design (PaCTD) rating system, created by the I AM ALS Clinical Trials Team led by Sandy Morris who is currently living with ALS. This rating evaluates clinical trials for humaneness and efficiency in their trial design. Based on many components laid out in the FDA’s guidelines for ALS trial design released last year this rating assesses for example, how the trial balances those receiving placebo versus the drug, whether those in the trial have access to the treatment after the trial ends, how the design advances the science by including research on the biology of the disease and the treatment’s effects and how accessible the trial is to patients, including the use of telemedicine. This rating does not evaluate drug safety or efficacy in any way. Learn more about the tenets of the PaCTD rating system.
The dashboard can be found at iamals.org/alssignal, along with an accompanying video explaining how to use ALS Signal to search for clinical trials relevant to various needs and situations. Additionally, links to trial information are included to allow for quick and easy access to the details of the listed trials.
About I AM ALS
I AM ALS is a patient-centric movement revolutionizing how to fight disease. The non-profit brings together ALS patients, advocates, organizations and researchers to deliver critical and innovative resources for patients, empower and mobilize patients and their networks to lead the fight for cures and transform the public understanding of ALS with a goal of delivering new, lifesaving drugs. Founded in 2019 by husband and wife team Brian Wallach and Sandra Abrevaya, I AM ALS was born out of their desire to rewrite the ALS story for Brian and the tens of thousands of other ALS patients. Learn more at iamals.org.
ALS is a disease that attacks cells in the body that control movement. It makes the brain stop talking to the muscles, causing increased paralysis over time. Ultimately, ALS patients become prisoners within their own bodies: unable to eat, talk, breathe or move on their own. Their mind, however, often remains sharp so they are aware of what’s happening to them. ALS will affect 1 in 300 people in our lifetimes, and patients usually have no more than 3 years to live following diagnosis.