UDSv4 and Digital Voice#

About Digital Voice#

ADRC Resources#

Supporting Digital Voice Data Collection - A Collaboration with the Clinical Task Force Technology Workgroup#

Events and Training#

FAQs#

• What are the benefits of digital biomarkers to my ADRC?

  There are many practical benefits to adding voice recording to your ADRC, they include:

  • Acting as a QC tool to determine natural drift in standardization in any longitudinal study
  • Providing an easy, low-cost collection of data that can be done in a participant’s preferred language
  • Allowing additional scientific enablement at no additional participant burden
  • Increasing opportunities to explore acoustic and semantic features in novel forms
• What are the benefits of digital biomarkers to participants?

  While direct participant benefit may be low at the outset, over time features of voice data may be able to:

  • Provide early indicators of cognitive impairment in preclinical or prodromal Alzheimer’s dementia
  • Help track disease progression and predict conversion to dementia
• What are the benefits of digital biomarkers to science?

  Features of voice data are already showing promise in:

  • Serving as a dementia screening tool to detect those at risk for dementia
  • Indicating the effectiveness of clinical trials
  • Associating with CSF biomarkers of disease
• How do I obtain local IRB approval?

  Please work with your local IRB to obtain regulatory approval for collecting digital voice data. You can reference this IRB protocol and consent language document for helpful tips and suggestions.

  PLEASE NOTE: NACC will not share any raw voice recordings until robust voice de-identification standards have been determined by NACC, NIA, ADRCs, and the CTF Technology Workgroup. NACC will provide additional guidance on data submission and sharing as this process is further defined.

• Can I use any recorder to capture voice data for the UDSv4?

  While many devices will record voice data, NACC has certain requirements for recording UDSv4 voice data:

  • Zoom H4N recorders are preferred
  • Limited background noise
  • At the beginning of the recording state staff ID, participant ID, study visit date and number, and what is being recorded
• Not all recorders are encrypted which may pose a significant risk should it be lost/misplaced if it contains PHI. Does this concern mean that only the more expensive, encrypted recorders should be used?

  This will be up to your local institution and ADRC. Your institution may want to adopt best practices such as;

  • Immediately upon the visit/recording&aposs termination, upload the file to a secure cloud server and delete it from the recording device.
  • If you are capturing digital voice on an iPhone there are ways to encrypt files using that device.

  There is no ‘one size fits all’ approach; however, each method will have its own issues and concerns with relation to privacy and security.

• Do I need to process the voice data at my ADRC?

  While all ADRCs are encouraged to keep voice files for their own use, all voice data will be uploaded to NACC

  • Use NACC naming conventions: NACCID_DATE_TESTNAME
  • Store in WAV format whenever possible
  • Enter meta-data of the test in UDSv4 dVoice form (under development)
• How do I submit digital voice data to NACC?

  NACC will be providing ADRC’s with a digital voice data submission option via the ADRC Portals hosted on NACC’s Data Platform. Learn more about the ADRC Portals.

  PLEASE NOTE: NACC will not share any raw voice recordings until robust voice de-identification standards have been determined by NACC, NIA, ADRCs, and the CTF Technology Workgroup. NACC will provide additional guidance on data submission and sharing as this process is further defined.

  At this time NACC is encouraging ADRCs to record and store digital voice data at their ADRC locally.

• What is the UDSv4 dVoice form?

  This is a form that is under development that will accompany any voice data uploaded; it includes but is not limited to the following data variables:

  • VISIT DATE
  • NACC VISIT NUMBER
  • COGNITIVE TEST
  • TIME STAMPS (if more than 1 cogtest present in recording)
  • INTERVIEWER INITIALS
  • MASK (whether interviewer and/or participant had a mask)
  • VISIT LOCATION/SETTING
  • MICROPHONE LOCATION
  • DEVICE MANUFACTURER
  • DEVICE MODEL
  • NUMBER OF RECORDING SUBJECTS
• How do you separate multiple speakers’ voices to focus on the participant’s voice?

  Sometimes it might be good to analyze ‘conversations’ however, automated methods are increasingly available and efficient in ‘cleaning’ vocal recordings down to a single speaker of interest.

• What is the process for scrubbing an audio file to remove PHI? Who is handling that task?

  De-identification tools are in process for voice masking and PII splicing; however, NACC will not share any vocal data until such de-identification processes are validated and complete on all vocal recordings. Given there are multiple levels of de-identification, exploration of all levels is underway. The most important is to de-identify the voice prints themselves; estimated voice masking technology deliverables may be as early as 2025 with at least some level of PHI removal.

• Is there a standard file type (WAV vs MP3) and bit-rate, bit depth minimums?

  Depending upon the recording equipment and/or platforms available to you, there are compromises that will need to be made (e.g., Zoom does not save to .wav formats), however, it should not prohibit you from collecting voice recordings should you wish.

  Recommended settings for digital voice recordings:

  • Uncompressed audio formats (e.g., WAV) are highly preferable.

    Sampling rate: 16KHz at a minimum (48KHz is recommended)

    Bit depth: 16-bit at a minimum (32-bit is recommended)

  • Compressed audio formats (e.g., MP3) are still accepted

    Sampling rate: must be 256kbps bit rate or higher

  • Please see the Digital Voice Data Collection Manual for recommended devices and device settings.

  Google has speech to text tool with their own recommendations which can be found here.

• Will there be measures taken to protect the neuropsychological recordings? Neuropsychologists are advised to prevent the release of stimulus materials, test procedures, etc. of neuropsychological data. Having these things recorded allows for the potential release of this information. In addition to the NACC Battery, some sites may include copyright protected measures in their site-specific battery. What steps can be taken to protect the collection of that specific copyright materials? Can we opt out of recording those measures?

  There is no “one size fits all” when it comes to determining what can be shared and in what form. NACC is working to come up with an appropriate governance structure that ensures participant privacy and confidentiality protection. Similarly to other clinical processes, each site is encouraged to share what is feasible, and NACC will respect any agreed upon limitations to what can be shared with researchers to ensure that proprietary or copyright information is protected.