May 20, 2021
The purpose of this Request for Information (RFI) is to invite comments and suggestions on access and use of data from the Adolescent Brain Cognitive DevelopmentSM (ABCD) Study, a population-based observational research initiative on child and adolescent health and development. The NIH is publishing this RFI to seek input on topics to inform development of data use guidelines, cloud-based analytic tools, and other resources from its stakeholders, including members of the scientific community, academic institutions, the private sector, health professionals, professional societies, as well as other interested members of the public.
Population-based biomedical research, such as the ABCD Study®, provides opportunities for leveraging increasingly complex datasets to explain behavior, predict outcomes, and investigate mechanistic pathways to understand health and disease. To fully realize these opportunities, data must be widely accessible and reusable, adhering to FAIR (findable, accessible, interoperable, reusable) principles for data use, management and stewardship.
The ABCD Study, launched in 2015, is the largest long-term study of brain development and child health in the United States, collecting a broad range of data from nearly 12,000 youth and their parents/caregivers beginning at ages 9 and 10. The ABCD Study protocol consists of assessments of physical and mental health, cognition, substance use, culture and environment, bioassays for hormones, genetics, environmental toxins and substance exposures; as well as multimodal brain imaging to track changes in brain structure (brain morphology and structural connectivity) and function (at rest and during cognitive tasks) as participants transition from childhood through adolescence into adulthood. These assessments are done annually (non-imaging) or biannually (imaging) for at least 10 years. For more information on the ABCD Study protocol, please visit https://abcdstudy.org/scientists-protocol.html.
The ABCD Study has partnered with the NIMH Data Archive (NDA) to release fast-track data to the scientific community containing unprocessed neuroimaging data (high-resolution structural data, advanced diffusion MRI, resting state fMRI, and Task fMRI, along with raw E-Prime task files for each fMRI run), as well as basic participant demographics from ABCD Study participants to date. Curated data, which include minimally processed neuroimaging data as well as tabulated neuroimaging and phenotypic data, are released annually via the NDA. Baseline data on the full participant cohort were made available in 2019 with ABCD Data Release 2.0. Data Release 3.0 was published in 2020 and includes one-year follow-up data on the full cohort. Please visit https://abcdstudy.org/wp-content/uploads/2020/06/Data_release_schedule2.pdf to view the data release schedule and the contents of each data release.
With the goal of supporting FAIR principles by promoting and facilitating widespread and efficient use of ABCD Study data by the scientific community, this RFI seeks input from stakeholders throughout the scientific research community and the general public.
The NIH seeks comments on any or all of, but not limited to, the following topics:
How to Submit a Response
Responses to this RFI must be submitted electronically via email to AdolescentBrain@mail.nih.gov
Responses must be received by June 30, 2021.
Responses to this RFI are voluntary. Do not include any proprietary, classified, confidential, trade secret, or sensitive information in your response. The responses will be reviewed by NIH staff, and individual feedback will not be provided to any responder. The Government will use the information submitted in response to this RFI at its discretion. The Government reserves the right to use any submitted information on public NIH websites, in reports, in summaries of the state of the science, in any possible resultant solicitation(s), grant(s), or cooperative agreement(s), or in the development of future funding opportunity announcements.
This RFI is for information and planning purposes only and shall not be construed as a solicitation, grant, or cooperative agreement, or as an obligation on the part of the Federal Government, the NIH, or individual NIH Institutes and Centers to provide support for any ideas identified in response to it. The Government will not pay for the preparation of any information submitted or for the Government’s use of such information. No basis for claims against the U.S. Government shall arise as a result of a response to this request for information or from the Government’s use of such information.
NIH looks forward to your input and we hope that you will share this RFI document with your colleagues.
Elizabeth A. Hoffman, Ph.D.
National Institute on Drug Abuse (NIDA)