Frequently Asked Questions for ABCD Participants

What happened that led to the New York Times article of 1/24/2026?

  • An article was published about the misuse of data from several studies, including data from the ABCD study.
  • Those named in the article submitted misleading information on their request to NIH to use ABCD data, and did not comply with standards of the data use. They then produced reports that were inaccurate and misleading.
  • The ABCD study condemns this misuse of participant data.

Was there a data breach that revealed my identity?

  • NO, there was no data breach of confidential personally identifiable information, such as names, addresses, phone numbers and birthdays.
  • Personally identifiable information was never, and will never, be released by the ABCD study.Protection of personally identifiable information remains the highest priority for ABCD.
  • This situation was not a breach of participant confidentiality, but rather improper data sharing, access, and analyses.
  • NIH withdrew the investigator’s access to data and strengthened data access safeguards with new protections to guard participant data.

What is “de-identified data”? 

  • When data is de-identified, it means that all personal characteristics have been removed (such as your name, birthday, phone number or address, among others).
  • Protection of this type of personal information is a key design feature and a high priority for ABCD.

What was done to address this problem with data access by those who should not have it?  How will NIH prevent this from happening again?

  • The NIH investigated and acted to remove data access now and in the future to the person who obtained the data unethically.
  • The NIH has developed a new platform to store and share ABCD data. It has a stricter process for researchers to access de-identified data including ABCD.
    • Scientists wanting to use ABCD data must go through responsible use of data training, be at an approved institution, and must not have had any previous data misuse or scientific misconduct.
    • When NIH learns of data misuse, they take action against the offender by discontinuing their data access and banning them from future access.
  • ABCD will continue to work with NIH toward enhancing existing safeguards and adding new protections to guard participant data.

Is my ABCD data safer now?

  • YES, personally identifiable information was never, and will never, be released by the ABCD study.
  • Protection of personally identifiable information remains the highest priority for ABCD.
  • NIH has added additional safeguards to protect participants.

What did ABCD do when they learned about this misleading and unethical science on the internet?

Why didn’t ABCD tell me that there was misleading and unethical science on the internet?

  • ABCD consulted experts to decide how to best limit the spread of these misleading reports. The consortium did NOT want to give more attention to these hurtful reports by telling more people about them.
  • ABCD does not include these problematic reports on our website publication listing.

What should I do if I see concerning or unethical statements coming from someone working with ABCD data?

  • If you come across any concerning, false or misleading statements using ABCD data, please contact your study site immediately. Contact information for each ABCD Study site is at the bottom of these FAQs.
  • You can also email the ABCD Coordinating Center at ABCD-cc@ucsd.edu.

Where can I get answers if I have questions about information in the New York Times article?

  • If you would like to discuss any of this or have any questions, you can email the ABCD coordinating center at ABCD-cc@ucsd.edu or contact your study site principal investigator (see below).

Site Contact Information

  • Children’s Hospital of Los Angeles (PIs: Elizabeth Sowell, PhD; Megan Herting, PhD): abcd@chla.usc.edu
  • Florida International University (PIs: Raul Gonzalez, PhD; Angela Laird, PhD): ABCD@fiu.edu
  • Laureate Institute for Brain Research (PIs: Martin Paulus, MD; Robin Aupperle, PhD): abcd@laureateinstitute.org
  • Medical University of South Carolina (PIs: Kevin Gray, MD, Lindsay Squeglia, PhD): abcdstudy@musc.edu
  • Oregon Health and Science University (PIs: Bonnie Nagel, PhD; Damien Fair, PhD, PA-C; Rebekah Huber, PhD): abcd@ohsu.edu
  • SRI International (PIs: Fiona Baker, PhD; Eva Muller-Oehring, PhD): abcd@sri.com
  • University of California, Los Angeles (PIs: Susan Bookheimer, PhD; Mirella Dapretto, PhD): abcdstudy@mednet.ucla.edu
  • University of California, San Diego (PIs: Susan Tapert, PhD; Joanna Jacobus, PhD): abcd@ucsd.edu
  • University of Colorado (PIs: Marie Banich, PhD; Naomi Friedman, PhD): abcd@colorado.edu
  • University of Florida (PIs: Linda Cottler, PhD, MPH; Sara Jo Nixon, PhD): abcd@health.ufl.edu
  • University of Maryland, Baltimore (PIs: Linda Chang, MD; Thomas Ernst, Ph.D.): abcd@som.umaryland.edu
  • University of Michigan (PIs: Mary Heitzeg, PhD; Chandra Sripada, MD, PhD): abcdmichigan@umich.edu
  • University of Minnesota (PIs: Monica Luciana, PhD; Sylia Wilson, PhD): abcd@umn.edu
  • University of Pittsburgh (PIs: Duncan Clark, PhD, MD; Beatriz Luna, PhD): abcd@upmc.edu
  • University of Rochester (PIs: John J. Foxe, Ph.D.; Edward Freedman, Ph.D.): ABCD@urmc.rochester.edu
  • University of Utah (PIs: Deborah Yurgelun-Todd, PhD, Perry Renshaw, MD, PhD, Erin McGlade, PhD): abcd@utah.edu
  • University of Vermont (PIs: Hugh Garavan, PhD and Alexandra Potter, PhD): abcd@uvm.edu
  • University of Wisconsin – Milwaukee (PIs: Krista Lisdahl, PhD; Christine Larson, PhD): abcduwm@gmail.com
  • Virginia Commonwealth University (PIs: James Bjork, PhD; Michael Neale, PhD): abcd@vcuhealth.org
  • Washington University St. Louis (PIs: Deanna Barch, PhD; Andrew Heath, DPhil; Pamela Madden, PhD): abcd@wustl.edu
  • Yale University (PIs: Arielle Baskin-Sommers, PhD; Dylan Gee, PhD; BJ Casey, PhD): ABCD@yale.edu