Parkinson DiseaseSAPNCT05889260
Speech Accessibility Project
An observational study of Parkinson Disease and Progressive Supranuclear Palsy, run by University of Illinois at Urbana-Champaign at 2 sites in United States.
Trial 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… Read more about this study
- Who is it for?
- Ages 18 years and older
- Conditions the study is for
- Parkinson Disease, Progressive Supranuclear Palsy, Multiple System Atrophy
- How many people
- 485 participants
- Where
- 2 sitesUnited States
- Study dates
- 15 Mar 2023to 31 Jul 2025
- How long will I take part?
- 21 Days
- Phase
- Observational
- Are there results?
- None posted in the registry
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages 18 years and older
- All sexes
- No healthy volunteers
- Adult, Older adult
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.
Who may be able to join
- 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
Who cannot join
- 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)
Trial locations and contacts
2 sites in 1 country.
United States2 sites
LSVT Global
Denver, Colorado, 80204
University of Illinois at Urbana-Champaign
Urbana, Illinois, 61801
About this study
Official title: People With Speech Disabilities Contributing Speech Samples for Improved Accessibility of Speech-Enabled Devices
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.
Read the detailed description
The goal of our project is to collect 1,200,000 speech samples from 2,000 people with dysarthria, where we expect to collect data from 400 people each from five different patient populations. Each person would provide 600 speech samples.
(600 samples/person x 400 persons/etiology x 5 etiologies = 1,200,000 samples)
Our schedule of research procedures is:
- February or March-August 2023: data collection of speech samples from 400 people with Parkinson's.
- August 2023-August 2025: data collection of speech samples from 1,600 people with ALS, CP, DS, and Stroke.
Data collection of speech samples in Year 1 will be a collaboration of the University of Illinois and of mentors from Lee Silverman Voice Therapy (LSVT) Global. Potential participants will be screened both with a questionnaire and by providing a short set of "quality control" speech samples. If the participant does not pass screening, they will be thanked for their interest. Otherwise, the participant is eligible for the study and can do the informed consent process and then engage in contributing speech samples.
Participants can do as many recordings as they wish at whatever time of day is convenient for them. Participants will be able to login to the system at any time, 24/7.
In Year 2, this procedure will be performed with patients from other etiologies with additional advocacy organizations as partners.
Participants who are unable to read text from the computer screen will be offered the opportunity to record speech using a verbal-repetition protocol. In order to participate in the verbal repetition protocol, a participant must be accompanied by a caregiver who is also willing to be recorded. If a participant agrees to this protocol, then the caregiver will read each prompt to the participant. The participant will then repeat the words spoken by the caregiver, or respond to any question asked by the caregiver.
Participants also have the option to provide additional data about themselves, such as their age, race and ethnicity, and the year of their diagnosis. These "metadata tags" are completely optional but are helpful for analysis.
The collected speech samples will be stored securely in a custom database built by the UIUC Beckman Institute. All samples are stored with a unique participant ID code. All samples are annotated by our UIUC research team with technical information about the acoustic waveform and other information.
The entire database of speech samples will be shared with our coalition partners (Amazon, Apple, Google, Meta, and Microsoft), and, after all data collection is complete, with other universities and companies who are willing to sign our data use agreement. Each partner has signed a data use agreement with UIUC that allows these deidentified data to be used for improvements in speech recognition technology and assures the privacy of participants and confidentiality of data.
- Conditions
- Parkinson Disease, Progressive Supranuclear Palsy, Multiple System Atrophy, Dementia With Lewy Bodies
- Medical subject headings
- Parkinson Disease, Supranuclear Palsy, Progressive, Multiple System Atrophy, Lewy Body Disease
What is being measured
The primary outcome is the main question the study is designed to answer.
Recorded Speech
Each participant records 600 sentences: 480 read sentences, and 120 spontaneous sentences recorded in response to 30 prompts.
Measured: 3-7 hours, self-paced
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted5 Jun 2023
- Study start15 Mar 2023
- Primary completion29 Mar 2025
- Study completion31 Jul 2025
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for Parkinson DiseaseStudies of the same condition, open and under way.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Observational model
- Ecologic or community
- Time perspective
- Cross-sectional
- Enrolment
- 485 participants (actual)
- Target duration
- 21 Days
Sponsor and investigators
- Lead sponsor
- University of Illinois at Urbana-Champaign
- Sponsor type
- University, hospital or other
- Collaborators
- LSVT Global, Amazon, Inc., Apple Inc., Google LLC., Meta Platforms, Inc., Microsoft Corporation
- Responsible party
- Sponsor
- Investigators
- Mark A Hasegawa-Johnson, Ph.D., Principal investigator, University of Illinois at Urbana-Champaign
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT05889260
- Sponsor's protocol ID
- 23183
- Acronym
- SAP
- Status last verified
- Aug 2025
- First submitted
- 24 May 2023
- Last updated
- 17 Aug 2025
- Results posted
- No
- Data monitoring committee
- No
- FDA-regulated drug
- No
- FDA-regulated device
- No
- Individual data sharing
- Yes: Participant speech data, and text transcripts created by University of Illinois annotators, will be distributed. Each data distribution will consist of a single archive file, compressed and encrypted using a secure key technology, so that it can only be decompressed by individual researchers who have been authorized under the terms of the data use agreement. Data distributions to coalition partners will never contain any information contributed by a participant other than their recorded speech samples.
Study at a glance
From the registry record, last updated by the sponsor on 17 Aug 2025. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- People With Speech Disabilities Contributing Speech Samples for Improved Accessibility of Speech-Enabled Devices
- ClinicalTrials.gov ID
- NCT05889260
- Acronym / sponsor ID
- SAP / 23183
- Conditions
- Parkinson Disease, Progressive Supranuclear Palsy, Multiple System Atrophy, Dementia With Lewy Bodies
- Study type
- Observational
- Recruitment status
- Completed
- Enrolment
- 485 participants (actual)
- Lead sponsor
- University of Illinois at Urbana-ChampaignUniversity, hospital or other
- Collaborators
- LSVT Global, Amazon, Inc., Apple Inc., Google LLC., Meta Platforms, Inc., Microsoft Corporation
- Study start
- 15 Mar 2023 (actual)
- Primary completion
- 29 Mar 2025 (actual)
- Study completion
- 31 Jul 2025 (actual)
- First posted
- 5 Jun 2023 (actual)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
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.
Detailed description
The goal of our project is to collect 1,200,000 speech samples from 2,000 people with dysarthria, where we expect to collect data from 400 people each from five different patient populations. Each person would provide 600 speech samples.
(600 samples/person x 400 persons/etiology x 5 etiologies = 1,200,000 samples)
Our schedule of research procedures is:
- February or March-August 2023: data collection of speech samples from 400 people with Parkinson's.
- August 2023-August 2025: data collection of speech samples from 1,600 people with ALS, CP, DS, and Stroke.
Data collection of speech samples in Year 1 will be a collaboration of the University of Illinois and of mentors from Lee Silverman Voice Therapy (LSVT) Global. Potential participants will be screened both with a questionnaire and by providing a short set of "quality control" speech samples. If the participant does not pass screening, they will be thanked for their interest. Otherwise, the participant is eligible for the study and can do the informed consent process and then engage in contributing speech samples.
Participants can do as many recordings as they wish at whatever time of day is convenient for them. Participants will be able to login to the system at any time, 24/7.
In Year 2, this procedure will be performed with patients from other etiologies with additional advocacy organizations as partners.
Participants who are unable to read text from the computer screen will be offered the opportunity to record speech using a verbal-repetition protocol. In order to participate in the verbal repetition protocol, a participant must be accompanied by a caregiver who is also willing to be recorded. If a participant agrees to this protocol, then the caregiver will read each prompt to the participant. The participant will then repeat the words spoken by the caregiver, or respond to any question asked by the caregiver.
Participants also have the option to provide additional data about themselves, such as their age, race and ethnicity, and the year of their diagnosis. These "metadata tags" are completely optional but are helpful for analysis.
The collected speech samples will be stored securely in a custom database built by the UIUC Beckman Institute. All samples are stored with a unique participant ID code. All samples are annotated by our UIUC research team with technical information about the acoustic waveform and other information.
The entire database of speech samples will be shared with our coalition partners (Amazon, Apple, Google, Meta, and Microsoft), and, after all data collection is complete, with other universities and companies who are willing to sign our data use agreement. Each partner has signed a data use agreement with UIUC that allows these deidentified data to be used for improvements in speech recognition technology and assures the privacy of participants and confidentiality of data.
Study design
- Observational model
- Ecologic or community
- Time perspective
- Cross-sectional
- Target follow-up
- 21 Days
Who may qualify
- Ages
- 18 years and older
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Adult, Older adult
- 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.
Key inclusion criteria (5 listed)
- 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
Key exclusion criteria (2 listed)
- 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)
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Primary outcome
Recorded Speech
Time frame: 3-7 hours, self-paced
Each participant records 600 sentences: 480 read sentences, and 120 spontaneous sentences recorded in response to 30 prompts.
Results and safety
The study is completed, but results are not available in the source record. That does not mean the treatment did or did not work.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 17 Aug 2025.
- Project information and contact informationLink provided by the sponsor.
- Individual participant dataSharing planned: Yes. Participant speech data, and text transcripts created by University of Illinois annotators, will be distributed. Each data distribution will consist of a single archive file, compressed and encrypted using a secure key technology, so that it can only be decompressed by individual researchers who have been authorized under the terms of the data use agreement. Data distributions to coalition partners will never contain any information contributed by a participant other than their recorded speech samples.
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part. This study is not recruiting at the moment.
Mark A Hasegawa-Johnson, Ph.D. principal investigator
University of Illinois at Urbana-Champaign
2 sites in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
An observational study of Parkinson Disease and Progressive Supranuclear Palsy, run by University of Illinois at Urbana-Champaign at 2 sites in United States.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 5 inclusion and 2 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: finished, as of the sponsor's last update on 17 Aug 2025. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 2 sites in United States. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
The study is completed, but results are not available in the source record. That does not mean the treatment did or did not work.
How can a doctor refer a patient or contact the research team?
The record lists no contact. The official record names the sponsor, who can be asked directly. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Recorded Speech (time frame: 3-7 hours, self-paced). It is what the study was designed to measure, not a finding.
Where can I read the original study information?
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 17 Aug 2025.