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A Bay Area nonprofit dedicated to advancing research on an incurable — and fatal — disease of the nervous system is looking for 300 more people by the end of this month to participate in the largest-ever research project on the illness.
EverythingALS already has recruited nearly 700 people this year in a national speech study that aims to collect quantifiable data on some of the early symptoms of amyotrophic lateral sclerosis, otherwise known as ALS or Lou Gehrig’s disease.
Gehrig was a New York Yankees player who was diagnosed with the rare degenerative condition at 36 and died in 1941 just before his 38th birthday.
An estimated 30,000 Americans are living with ALS, which causes widespread loss of muscle control as nerve cells in the brain and spinal cord are destroyed.
Early symptoms range from twitching, cramps and weakness to difficulty chewing and slurred speech. Patients typically do not live more than five years after signs of the disease first appear.
“With 1,000 participants, which is the largest group that has ever been recruited to conduct a neurological assessment of people with ALS, we are reinventing the research platform by using a patient-centric, citizen-science approach to moving things 1,000 times faster,” said EverythingALS co-founder Indu Navar in a press release.
A smaller speech study earlier this year collected data that only recently led to the identification of breathing patterns and mouth movements that differ significantly between healthy individuals and patients with ALS, including those who are pre-symptomatic.
Now EverythingALS wants to have at least 1,000 participants on board by Thanksgiving in its so-called “Speech Bucket Challenge” in hopes that the larger trial will validate the nexus between ALS and speech anomalies.
As facial muscles lose their flexibility, it becomes increasingly difficult to open the mouth wide enough and use the tongue to form certain sounds. Throat muscles also constrict, which limits the volume of air that must pass over the vocal cords for someone to be able to speak.
The study is done remotely via web-based computer software that records and analyzes how quickly and deeply participants breathe as well as the volume of their voice as they speak into a microphone.
Anyone with an Internet connection, webcam and microphone can take part in the project, which is open to those known or suspected to have ALS as well as to healthy individuals who can serve as controls.
Volunteers converse with an avatar — a virtual assistant called Tina — while a webcam and microphone record their speech and facial gestures for the Modality.ai software to analyze.
Advocates for the study note that until now the number of ALS patients involved in research has been small because they often have difficulty traveling to the facilities where the work is done.
But most have smartphones and computers, which makes remote data collection a viable option.