Enhancing multi‐site autism research through the development of a collaborative data platform

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Anderson, J. T., Roth, J., Rosenau, K. A., Dwyer, P., Kuo, A. A., & Martinez-Agosto, J. A. (2024). Enhancing multi‐site autism research through the development of a collaborative data platform. Autism Research, 17(7), 1322-1327. https://doi.org/10.1002/aur.3167

Publication date: 24 May 2024 Added to AutiHub: 5 Jul 2026 Type: Article Article language: English
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Authors

Publication authors
6
Publication authors identified as autistic
1 / 6 (16.7%)
  1. Jeffrey T. Anderson
  2. Jeffrey Roth
  3. Kashia A Rosenau
  1. Patrick Dwyer *
  2. Alice A. Kuo
  3. Julian A. Martinez-Agosto

Abstract

Data repositories, particularly those storing data on vulnerable populations, increasingly need to carefully consider not only what data is being collected, but how it will be used. As such, the Autism Intervention Research Network on Physical Health (AIR-P) has created the Infrastructure for Collaborative Research (ICR) to establish standards on data collection practices in Autism repositories. The ICR will strive to encourage inter-site collaboration, amplify autistic voices, and widen accessibility to data. The ICR is staged as a three-tiered framework consisting of (1) a request for proposals system, (2) a REDCap-based data repository, and (3) public data dashboards to display aggregate de-identified data. Coupled with a review process including autistic and non-autistic researchers, this framework aims to propel the implementation of equitable autism research, enhance standardization within and between studies, and boost transparency and dissemination of findings. In addition, the inclusion of a contact registry that study participants can opt into creates the base for a robust participant pool. As such, researchers can leverage the platform to identify, reach, and distribute electronic materials to a greater proportion of potential participants who likely fall within their eligibility criteria. By incorporating practices that promote effective communication between researchers and participants, the ICR can facilitate research that is both considerate of and a benefit to autistic people.

Bibliography cited by this reference

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These indicators describe the cited bibliography imported for this publication. Cited-reference metrics use the cited-reference total as denominator. Cited-author metrics state whether they use all cited-author occurrences or only occurrences linked to authors already integrated in the AutiHub database. They use cached links between cited authors and authors integrated in the AutiHub database. Last computed: 16 Aug 2026 11:30.

Cited references
17
Total cited references integrated for this publication.
Cited references with an identified autistic author
6 / 17 (35.3%)
Cited author occurrences identified as autistic
40 / 151 (26.5%)
Among occurrences linked to AutiHub author records: 40 / 105 (38.1%). Distinct cited authors identified as autistic: 19 / 109 (17.4%).
Cited author occurrences linked to AutiHub author records
105 / 151 (69.5%)
Distinct linked cited authors: 65 / 109 (59.6%)
Linked cited-author occurrences not identified as autistic
65 / 105 (61.9%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 65 / 151 (43.0%). Distinct linked cited authors not identified as autistic: 46 / 65 (70.8%).
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