Clinical Research ‘Dashboard’ Brings Latest on ALS Trials to Patients

Clinical Research ‘Dashboard’ Brings Latest on ALS Trials to Patients
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The nonprofit group I AM ALS has opened a global resource to help keep amyotrophic lateral sclerosis (ALS) patients and their caregivers fully aware of clinical research underway.

Called ALS Signal: Clinical Research Dashboard and created by patients, caregivers, and advocates, the dashboard offers a user-friendly way to learn about current and upcoming studies, and to make informed care decisions. Its overarching goal is to advance ALS research toward a cure.

“I AM ALS is committed to putting treatments and cures in the hands of people living with ALS as quickly as possible,”  Danielle Carnival, CEO of I AM ALS, said in a press release. “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.”

ALS Signal features a “five star” rating system of what’s called Patient-Centric Trial Design. Created by a I AM ALS team led by patient Sandy Morris, this rating system assesses trial designs for humaneness and efficiency in three categories: optimizing access to investigational therapies, advancing scientific progress, and patient friendliness.

The system is based on the U.S. Food and Drug Administration’s most recent guidelines for ALS trial design, and evaluates, for example, how a trial balances the use of placebo with the actual treatment candidates, patient access to the therapy after a trial ends, how well the trial’s design is likely to advance science, and trial accessibility.

“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,” Carnival said.

The dashboard also offers an overall snapshot of current and upcoming trials that includes locations, enrollment statuses, and phase types. Information for each trial notes its sponsor, country location, recruitment status, target enrollment, trial type, how the treatment is administered, and trial phase and duration. Each is also linked to a federal clinical trials website that offers more information.

Go here for ALS Signal, and to view a video explaining how to best to use this resource in searching for various trials.

I AM ALS brings together ALS patients, advocates, organizations, and researchers to deliver innovative resources to patients, and to heighten public understanding of ALS in order to raise funds to find a cure.

Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
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Ana holds a PhD in Immunology from the University of Lisbon and worked as a postdoctoral researcher at Instituto de Medicina Molecular (iMM) in Lisbon, Portugal. She graduated with a BSc in Genetics from the University of Newcastle and received a Masters in Biomolecular Archaeology from the University of Manchester, England. After leaving the lab to pursue a career in Science Communication, she served as the Director of Science Communication at iMM.
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Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
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