FAQs

What is WBHI Brain Bank?

  • The WBHI Brain Bank is a large-scale dataset of brain imaging and women’s health–related phenotypes. This dataset is composed of neuroimaging and phenotypic data integrated across participating Brain Imaging Centers. In summary, BIC users (i.e. principal investigators) at participating sites agree to share neuroimaging data with WBHI (via Flywheel) in addition to administering or asking participants to complete the WBHI REDCap questionnaire.

  • These data are maintained, stored and made publicly available on OpenNeuro, care of the WBHI Data Coordination Core, located at Stanford University.

Yes. All are eligible and needed for the study to be most impactful.

There is an existing IRB Reliance Registry/SMART IRB that spans the UCs. In addition to consenting into the parent, site-specific study, participants electronically consent (via a REDCap form) to the WBHI study (i.e. Base). If already allowed to ask participants if they would be interested in another related study, participating researchers do not necessarily need any additional approval.

No. But if you are interested in using Flywheel as a data management service we encourage you to take advantage of WBHI’s Flywheel account, provided pro bono.

The survey takes 5 to 15 minutes to complete and, aside from email address for recontact and/or disbursement of electronic gift card, no identifying information is collected. The survey is administered by REDCap and can be completed on any web browser, including mobile devices. Skip logic ensures only relevant questions are given to participants, streamlining the user experience. While additional instruments may be included in the future, the core survey contains questions regarding demographics, medical and health history, reproductive health history, hormonal medication use, sleep, mood, and migraine.

Yes. Participants are eligible for a $10 gift card administered digitally via REDCap upon completion of the questionnaire.

WBHI Base is funded through an endowment from Ann S. Bowers.

Neuroimaging data is initially pushed to a site-specific project folder, where it is de-identified and bids-ified. Data that pair with a corresponding REDCap questionnaire are copied into a WBHI-specific project folder. Data in the WBHI folder are pre-processed and then stored on OpenNeuro in a site-specific dataset.

While the WBHI Brain Bank does not currently support longitudinal data storage, this is a future aim.

  • Women’s brain health is understudied. We can fill the void together.

  • While the workflow looks like a lot, in practice this adds a very small amount of time to the participant experience (in some cases mere seconds if they opt to complete the survey at home). Creating a unified University of California Brain Imaging Database, with a set of standardized metrics pooled across sites, represents a watershed moment for the UC system. We have the infrastructure in place to make it happen. We need a modicum of your time and support to put the plan into action.

  • Women’s health research is underfunded and understudied. Historically, most of what we know about health and disease centers on the male body. And yet 70% of Alzheimer’s patients are women. 2 out of every 3 people who suffer from depression are women. And there are some conditions only people with a uterus will experience—e.g., postpartum depression and perimenopausal brain fog— and these deserve our attention.

  • Neuroscience has overlooked aspects of the human condition relevant to half of the world’s population. Our mission is to close the gender data gap.

  • While women’s brain health is our passion, our broader goal for WBHI Base is to help close the data gap across underserved populations by offering this open-access, large n, high quality neuroimaging dataset to the global scientific community.

WBHI Brain Bank is overseen by Caitlin Taylor, the WBHI Director of Operations, and Josh Buckholtz, the Data Coordinating Center Executive Director.

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Participation

  • At time of scanning, your lab would:

    • Ask the participant about their willingness to complete a brief add-on survey If they are, use any web browser to access the RedCap questionnaire (https://redcap.link/BrainHealth). Central to this is that you enter your lab name and the lab-specific anonymous participant identifier. This greatly helps in linking the survey and MRI data.

    • Either have the participant complete the survey while at the MRI center or send them home with the required information to complete it soon thereafter (by filling out the provided business cards with Site, PI Name, Scan Date, MRI Code (Participant ID), and whether the scan took place in AM or PM). Initiate the MRI data transfer to your local WBHI Flywheel instance

  • Your lab / lab manager may be contacted to help with any missing data or issues in linking MRI and survey data.

 

The WBHI Brain Bank combines neuroimaging data with questionnaire-derived phenotypic metadata. REDCap questionnaire data is acquired from individuals participating in neuroimaging research studies at our WBHI Brain Bank data collection sites. Eligible neuroimaging data acquired at each of our participating data collection sites is pushed to Flywheel where it is paired with REDCap questionnaire data and stored on OpenNeuro.

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Yes! We are happy to field suggestions for additional instruments to be added to the questionnaire. Additionally, we are able to incorporate instruments for limited times to facilitate data collection for participating labs. For information, please email info@wbhi.ucsb.edu with your request.

Participation is completely voluntary and can be on a case-by-case basis. For instance, data from one study can be withheld while data from another can be pushed to Flywheel, or data shared with WBHI can be on a participant-by-participant basis.

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Participants must be 18 years of age or older, and not part of an experimental or clinical group (e.g. post-TMS, post-pharmacological intervention, or from a case population)

Data pushed to Flywheel are automatically sorted by PI. Individuals identified as being affiliated with your lab and approved to have a Flywheel account will be given access to your lab’s project folder on Flywheel. At this point, you will have access to Flywheel’s gears and integrated tools for your data management and processing needs. a site-specific dataset.

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We aim to have questionnaire data reflect as closely as possible the corresponding neuroimaging data. This means that the questionnaire and neuroimaging data should be collected as close in time as possible. With this, we request that questionnaires are not filled out >2 weeks before or after neuroimaging data acquisition.

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Security

Flywheel uses Amazon Web Services, Inc. (AWS), Google Cloud Platform (GCP), and Microsoft Azure (Azure) to provide cloud hosting services. FW is a System and Organization Controls 2 (SOC2)-certified organization

  • REDCap is a secure web application for building and managing online surveys and databases.

  • Beyond email addresses (provided by the participant), no identifying information is collected in the WBHI REDCap questionnaire. Only WBHI administrators have access to participant email addresses. The email addresses collected as part of this study will be used exclusively for the purposes outlined in our research (i.e. for disbursement of electronic gift cards and for contacting for future studies). They will not be shared with any outside institutions, third parties, or used for any commercial or monetary benefit. Participant confidentiality is a priority, and we are committed to maintaining the highest standards of data protection.

  • Flywheel uses Amazon Web Services, Inc. (AWS), Google Cloud Platform (GCP), and Microsoft Azure (Azure) to provide cloud hosting services. FW is a System and Organization
  • Controls 2 (SOC2)-certified organization REDCap is a secure web application for building and managing online surveys and databases.
  • Beyond email addresses (provided by the participant), no identifying information is collected in the WBHI REDCap questionnaire. Only WBHI administrators have access to participant email addresses. The email addresses collected as part of this study will be used exclusively for the purposes outlined in our research (i.e. for disbursement of electronic gift cards and for contacting for future studies). They will not be shared with any outside institutions, third parties, or used for any commercial or monetary benefit. Participant confidentiality is a priority, and we are committed to maintaining the highest standards of data protection.
  • OpenNeuro only houses data that have been defaced and do not include any identifiable personal health information as defined by the Health Insurance Portability and Accountability Act of 1996 (including names, zip codes, dates of birth, acquisition dates, facial features on structural scans, etc.).

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Access

Please reach out to Caitlin Taylor at cmtaylor@ucsb.edu

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Further questions

For additional information, feel free to email the WBHI team at info@wbhi.ucsb.edu.