Speech Accessibility Project

NCT05889260 | Completed

• 1 other identifier: 23183
• Study Type: observational
• Target: 485
• Locations: 1 country
• Sites: 2

Brief Summary

The goal of the Speech Accessibility Project at the University of Illinois Beckman Institute (https://speechaccessibilityproject.beckman.illinois.edu) is to collect, annotate, and curate a shared database of speech samples from people with atypical speech, and share this data set with researchers at other organizations. This two-year project plans to collect 1,200,000 speech samples from 2,000 people, each of whom will provide 600 samples. In Year 1, the initial focus will be people with Parkinson's. In Year 2, four more etiologies of interest will be recruited: Amyotrophic Lateral Sclerosis (ALS), Cerebral Palsy (CP), Down Syndrome (DS), and Stroke. UIUC will build an open-source software infrastructure to collect annotated speech samples and share these data in an appropriately secure fashion with researchers from our partner technology companies (and eventually, other organizations as well) so that they can use these data to improve their automatic speech recognition algorithms. This project promotes diversity, equity, and inclusion by helping technology companies to fully support all types of speech, and it is also more efficient and less burdensome for these specialized patient populations to have one centralized "collector" of speech samples.

Conditions

Parkinson Disease; Progressive Supranuclear Palsy; Multiple System Atrophy; Dementia With Lewy Bodies

Outcome Measures

Primary Outcomes (1)

• Recorded Speech

  Each participant records 600 sentences: 480 read sentences, and 120 spontaneous sentences recorded in response to 30 prompts.

  3-7 hours, self-paced

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

People currently residing in the United States or Canada, excluding the states of Washington, Texas, or Illinois, with speech disability related to a neuromotor disorder.

You may qualify if:

• Adult (age \>= 18 years)
• Self-reported diagnosis of Parkinson's Disease, ALS, CP, DS, or Stroke
• Reads and speaks English in the form of complete sentences
• Has a valid email address
• Ability to access web browser to participate in study

You may not qualify if:

• Is a resident of the State of Washington, Texas, or Illinois (because these states have privacy laws that would not allow us to collect 'voice prints')
• If quality control screening of initial speech samples "fails" because of poor data quality (e.g., poor quality recording environment, or person's speech is "too typical" and not sufficiently interesting to continue collecting)

Sponsors & Collaborators

• University of Illinois at Urbana-Champaign: lead
• LSVT Global: collaborator
• Amazon, Inc.: collaborator
• Apple Inc.: collaborator
• Google LLC.: collaborator
• Meta Platforms, Inc.: collaborator
• Microsoft Corporation: collaborator

Study Sites (2)

LSVT Global

Denver, Colorado, 80204, United States

Location

University of Illinois at Urbana-Champaign

Urbana, Illinois, 61801, United States

Location

Related Links

• Project information and contact information

MeSH Terms

Conditions

Parkinson Disease; Supranuclear Palsy, Progressive; Multiple System Atrophy; Lewy Body Disease

Condition Hierarchy (Ancestors)

Parkinsonian Disorders; Basal Ganglia Diseases; Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Movement Disorders; Synucleinopathies; Neurodegenerative Diseases; Ophthalmoplegia; Ocular Motility Disorders; Cranial Nerve Diseases; Tauopathies; Paralysis; Neurologic Manifestations; Eye Diseases; Signs and Symptoms; Pathological Conditions, Signs and Symptoms; Primary Dysautonomias; Autonomic Nervous System Diseases; Dementia; Neurocognitive Disorders; Mental Disorders

Study Officials

• Mark A Hasegawa-Johnson, Ph.D.

  University of Illinois at Urbana-Champaign

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: ECOLOGIC OR COMMUNITY
• Time Perspective: CROSS SECTIONAL
• Target Duration: 21 Days
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: May 24, 2023
• First Posted: June 5, 2023
• Study Start: March 15, 2023
• Primary Completion: March 29, 2025
• Study Completion: July 31, 2025
• Last Updated: August 17, 2025

Record last verified: 2025-08

Data Sharing

• IPD Sharing: Will share
• Shared Documents: ICF
• Time Frame: Data will be available to sponsoring organizations beginning in June 2023. Data will be available to other research organizations beginning in April 2024. Data will be available to other research organizations in perpetuity; a standing review committee will be established at the University of Illinois to review applications for access to this dataset at any time in the future.
• Access Criteria: Before any research institution is permitted to receive any speech audio recordings, they will be required to sign a data use agreement. Key terms of the data use agreement will include commitments that the research institution (a) is an organization or individual with the legal status necessary to sign a contract, (b) will not make the speech audio recordings available to any individual who is not bound by the member's signature on the data use agreement, (c) will store the data in a secure fashion to prevent data theft, and (d) will not seek to identify any of the participants.

Locations

US (2)