TalkBank

IRB Approval

This page explains the principles involved in securing IRB permission for data sharing. If you already have this clearance and are ready to contribute your data to TalkBank (CHILDES, AphasiaBank, SLABank, etc.), you should follow these instructions on how to actually submit your data.

IRB Principles

TalkBank members who are interested in contributing their data need to make sure that they obtain IRB approval for their study, along with informed consent from individual participants. There are no standard forms for IRB applications, since every University or Institute creates their own forms, procedures, and templates. For the purposes of contributing to TalkBank, the important thing is to select the appropriate level of access to the data that participants are being asked to grant. To help you determine this, we have created an OPTIONS summary for the 9 options that are available. We would recommend that you ask participants to permit unrestricted access with pseudonymization of the transcripts (Options 1 and 2). You should include on your form the fact that participants always have the right to request that parts or all of the data in which they participate be removed from TalkBank at any time.

Contributions of Archival Data

Often researchers will wish to contribute data collected in projects that have already been completed. In such cases, it may be difficult or impossible to contact participants to obtain a new consent form. However, IRBs are allowed to permit including these data in TalkBank, if certain conditions are met.

1. The original consent forms should not have exclusionary language such as "These data will only be made available to Professor XYZ and her laboratory". If the consent forms says something like "These data will only be made available to qualified researchers," then inclusion in TalkBank should be allowed, as long as only qualified researchers are given the necessary password. If the consent form is still more general, then passwords may not be necessary.
2. Data should be anonymized.
3. Additional protection is possible, as described on the options summary page .
4. Federal granting agencies stipulate that data collected with federal funds should be made available to researchers, as long as anonymity is preserved.

Contributions to CHILDES and PhonBank

Although each University and project will have different requirements, contributors often ask for a generic contribution template form, so here is a sample CHILDES/PhonBank consent form based roughly on the local format at CMU.

Contributing audio

Researchers often ask about whether they need to request additional IRB approval for contributing audio data. The concern is that audio data may be less confidential than transcript data. However, as long as identifying material is removed from both transcripts and audio, they do not present additional confidentiality issues. To do this properly, it is important to replace any last names in the transcripts with the word "Lastname" with a capital L. Also addresses or local city names should be replaced with "Address" with a capital A. These same English words should be used even in other languages. It is not crucial to replace children's first names unless they are very unique. For audio deidentfication, we can then use the occurrences of the terms Lastname and Address in the transcripts to guide the removal of the names and addresses from the corresponding segment in the audio track using the SILENCE program in CLAN or hand silencing in Amadeus Pro. Once this is done, children and others can only be identified by people who already know them. Because of this, contribution of audio is equivalent in IRB terms to contribution of transcripts.

Contributions to AphasiaBank/DementiaBank/TBIBank/RHDBank:

Research with subjects with disabilities requires additional access restriction, such as password protection. It may also require more complete IRB documentation. In this regard, researchers working with the AphasiaBank protocol will find these additional IRB materials useful:

• A generic informed consent form in the CMU format.
• Approved consent form from CMU
• Approved consent form from Emerson.
• Approved consent form from Kansas (Susan Jackson) for Mandarin.
• Approved set of consent forms from Indiana University - 2020
  • Consent form for PWA
  • Consent form for Control
  • Verbal script for consent
• Approved full IRB from University of South Florida.
• Approved full IRB from Kansas with these related documents:
  • Consent form for surrogate
  • Consent form for persons with aphasia
  • Assent form for persons with aphasia
  • Recruitment poster

Four picture-based consent forms for people with aphasia:
• a very simple one
• one from USF
• one from the Adler Center,
• and one specifically for use with the Famous People Protocol.

Contributions to the other three clinical databanks -- DementiaBank, RHDBank, and TBIBank can follow formats similar those given above for AphasiaBank. The issues involved are generally similar.

Contributions to FluencyBank

To protect subject confidentiality, all research contributions to FluencyBank are restricted and require password to access. We suggest that new projects use a graduated consent form developed at the University of Maryland, that allows participants to specify use of video, audio-only, or transcript-only in contributed data. When communicating with your IRB, you may find the suggestions in this briefing sheet helpful.

For projects underway, or recently completed, or longitudinal projects in which PIs would like to have an ongoing relationship before making a contribution request of subjects, we have a sample post-hoc consent form from the University of Maryland.

For completed projects that have used video without permission to share the video, we will work with you to extract the audio tracks from your video files. (Please see Contributing audio, above, for reasons why this may not require additional IRB consideration). Please contact Brian MacWhinney or Nan Bernstein Ratner to determine how best to handle your data.