San Francisco (CBS SF) – a Bay Area nonprofit organization dedicated to advancing research on an incurable – and deadly – disease of the nervous system is looking for 300 more people by the end of this month to participate in the largest research project ever on a disease.
EverythingALS has already recruited nearly 700 people this year into a national speech study aimed at collecting quantifiable data on some of the early symptoms of amyotrophic lateral sclerosis, better known as ALS or Lou Gehrig’s disease.
Gehrig was a New York Yankees player who was diagnosed with the rare degenerative condition at age 36 and died in 1941 just before his 38th birthday.
An estimated 30,000 Americans live with ALS, which causes widespread loss of muscle control as nerve cells in the brain and spinal cord are destroyed.
Early symptoms range from tingling, cramps, and weakness to difficulty chewing and slurred speech. Patients usually do not live more than five years after the first signs of the disease appear.
“With 1,000 participants, the largest group ever recruited to perform a neurological assessment of people with ALS, we are reinventing the research platform using a patient-centric and citizen-science approach to move things 1,000 times faster,” said EverythingALS co-founder, Indu Navar at Press release.
A smaller study of speech 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 without symptoms.
Now EverythingALS wants to have at least 1,000 participants on board by ‘Thanksgiving’ in the so-called ‘Speech Bucket Challenge’ with the hope that a larger trial will validate the link between ALS and speech abnormalities.
As the facial muscles lose their elasticity, it becomes increasingly difficult to open the mouth wide enough and use the tongue to form certain sounds. The throat muscles also contract, limiting the amount of air that must pass through the vocal cords for a person to speak.
The study is conducted remotely via a web-based computer program that records and analyzes how fast and deep participants breathe as well as the volume of their voice while speaking into a microphone.
Anyone with an internet connection, a webcam and a microphone can participate in the project, which is open to people known or suspected to have ALS as well as to healthy individuals who can act as controls.
Volunteers talk with an avatar – a virtual assistant called Tina – while the webcam and microphone record their speech and facial gestures for Modality.ai software for analysis.
Study advocates note that so far the number of ALS patients participating in the research has been small because they often find it difficult to travel to facilities where work is taking place.
But most have smartphones and computers, which makes remote data collection a viable option.
For more information or to join the study, email email@example.com or call (650) 833-9100. To learn more about the organization, visit everythingals.org.
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