top of page

Austen Speech Study

EverythingALS is building an active, growing citizen research participants to draw from the community of over 7,000 People with ALS and Caregivers who collaborate directly with leading minds at eminent research institutions, jointly executing IRB-approved studies with EverythingALS for digital biomarker research to detect subtypes of ALS progression, early diagnosis and for remote patient monitoring.


Collect Data

Create Objective Measures

Creation of a robust, longitudinal data collection  - DEI achieved

 Fostering engagement

Data & Research Output:

Cohort characteristics







Citizen Driven Rapid Recruitment


EverythingALS implemented a grassroots effort to recruit participants from our patient support community. With a reach that expands to 7,000 email subscribers, over 300,000 YouTube viewers, and 5,000 total attendees to our weekly Fireside Chats and ALS Expert Talk Series presentations, our organic method of recruitment is built on the solid reputation has secured by gaining patient trust as a leader in the research field.  The membership comprises people with ALS in different stages or diagnoses, their caregivers, and healthy research participants (controls).

Broad Geographic Distribution


In collaboration and consultation with people with lived experiences with ALS (pALS and cALS) and in collaboration with leading clinical research experts and clinicians treating people with ALS,   EverythingALS was convinced that the gaps could be filled by taking the tests out of the clinic and taking them to the participants, in their own homes.

This new methodology, rooted in remote monitoring, sensor-driven data capture, and human experience support, hopes to foster engagement and collaboration between pALS, caregivers, researchers, and drug companies through an open-innovation platform approach to further studies using other digital data capture modalities beyond speech. This allowed for pALS from all over the country to contribute to the Austen Study.

Ethnic Inclusion Access and Equity


Remote study engagement, driven by diverse content marketing and awareness-raising of the EverythingALS mission and Citizen-driven research,  has consistently delivered greater participant diversity compared with natural history study demographics performed on-site. However, recruitment and participation among African Americans remain lower than desired to achieve representation targets among all major ethnicities. EverythingALS is committed to improving this representation through direct feedback and guidance from black and African American participants, as well as collaborating with key stakeholders in engaging African American potential participants.”

Request access to the Open Data
bottom of page