Data sharing in child and adolescent psychiatry research: Key challenges (and some potential solutions)

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Oakley, B., Lautarescu, A., Charman, T., Chatham, C., Loth, E., Beckmann, C., Bourgeron, T., Campana, F., Holt, R. J., Eaton, E., Violland, P., Van den Bosch, K., Heraty, S., Wagers, S., Buitelaar, J. K., Murphy, D., Goodwin, A., Jones, E., & Group, T. A. L. (2025). Data sharing in child and adolescent psychiatry research: Key challenges (and some potential solutions). Open Research Europe, 5, 93. https://doi.org/10.12688/openreseurope.18147.1

Publication date: 31 Mar 2025 Added to AutiHub: 24 Sep 2026 Type: Article Article language: English
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Publication authors
19
Publication authors identified as autistic
1 / 19 (5.3%)
  1. Bethany Oakley
  2. Alexandra Lautarescu
  3. Tony Charman
  4. Christopher Chatham
  5. Eva Loth
  6. Christian Beckmann
  7. Thomas Bourgeron
  1. Florence Campana
  2. R. J. Holt
  3. Eliza Eaton *
  4. Pierre Violland
  5. Katrien Van den Bosch
  6. Siofra Heraty
  7. Scott Wagers
  1. Jan K. Buitelaar
  2. Declan Murphy
  3. Amy Goodwin
  4. Emily Jones
  5. The AIMS LEAP Group

Abstract

Background The field of biomedical research is entering a new era, in which public data sharing is increasingly the norm. There are many advantages of embracing data sharing initiatives, including tackling the replication crisis through enhanced transparency and publication of null findings, facilitating global collaborations to accelerate research progress, enhancing cost-effectiveness by reducing duplication of efforts, and making scientific advances more accessible to the public. However, there are also several crucial ethical and logistical challenges that must be addressed to maximise the benefits of data sharing and minimise risks. The potential, and increasingly recognised, risks of unregulated data sharing (e.g., data reidentification, misuse, and lack of representativeness due to variability in who agrees to share data) have also been exemplified by high profile data breaches and directly clash with efforts to make research more robust, accessible, and global. Methods/Results Here, we narratively outline current challenges for data sharing from the perspective of child and adolescent psychiatry, one area where they may be particularly acute. For example, child and early adolescent research often requires caregivers to consent on behalf of a minor – increasing the responsibility of researchers to consider how the science of today may evolve into the future (when those individuals are no longer minors). We use data from our research consortium Autism Innovative Medicines Study - 2 - Trials (AIMS-2-TRIALS; https://www.aims-2-trials.eu/ ) to illustrate the points raised in this perspective piece. Conclusions We also propose some potential solutions to begin to address current challenges for data sharing, focusing on key priorities, including shared control of data curation between researcher and participant communities and equity of access by research groups to the tools and resources needed to conduct responsible and sustainable data sharing.

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Cited references
77
With a DOI
73
Without a DOI, from raw bibliography text
4
0 / 77 (0.0%) cited references include at least one author identified as autistic.
References with data to complete
2 / 77 (2.6%)
References with detected author names
75 / 77 (97.4%)
Without detected author names
2
Without a structured title
0
Without a stable identifier
3
References with raw author names still to review
0
References with external metadata lookup issues
0
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
1114
From DOI or external metadata
1114
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
0
91 / 1114 (8.2%) names are linked to an author already present in AutiHub. 1023 / 1114 (91.8%) names are not yet linked.
Names linked to a person identified as autistic
0 / 1114 (0.0%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 0 / 91 (0.0%). Distinct people identified as autistic: 0 / 994 (0.0%).
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