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

This publication is included in the Autistic Autism Scholarship Project. one author of this publication is identified as autistic in the project.

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Anderson, J. S., 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

Journal or book title
Autism Research
Publisher
Wiley
Volume
17
Issue
7
Pages
1322-1327
Publication date: 24 May 2024 Added to AutiHub: 5 Jul 2026 Type: Article Article language: English
Publisher source (DOI) Full text OpenAlex source

This publication is integrated into AutiHub through:

Authors

Publication authors
6
Publication authors identified as autistic
1 / 6 (16.7%)
  1. Jeffrey S. 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

Cited references are imported from external metadata sources when they are available. The list may be partial.

Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 3 Oct 2026 08:16.

Cited references
17
With a DOI
17
Without a DOI, from raw bibliography text
0
6 / 17 (35.3%) cited references include at least one author identified as autistic.
References with data to complete
0 / 17 (0.0%)
References with detected author names
17 / 17 (100.0%)
Without detected author names
0
Without a structured title
0
Without a stable identifier
0
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
151
From DOI or external metadata
151
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
0
107 / 151 (70.9%) names are linked to an author already present in AutiHub. 44 / 151 (29.1%) names are not yet linked.
Names linked to a person identified as autistic
43 / 151 (28.5%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 43 / 107 (40.2%). Distinct people identified as autistic: 22 / 109 (20.2%).
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    Crossref OpenAlex OpenCitations
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    Type: Article DOI: 10.1007/s40273-015-0331-6 OpenAlex: https://openalex.org/W2174595477
    Crossref OpenAlex OpenCitations
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    Type: Article DOI: 10.1016/j.nbd.2018.05.026 OpenAlex: https://openalex.org/W2807034777
    Crossref OpenAlex OpenCitations
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    Type: Article DOI: 10.1016/j.jbi.2019.103208 OpenAlex: https://openalex.org/W2944434778
    Crossref OpenAlex OpenCitations
  12. Michael Lombardo , Meng-Chuan Lai , Simon Baron-Cohen (2019). Big data approaches to decomposing heterogeneity across the autism spectrum . Molecular Psychiatry, 24(10), 1435-1450. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1038/s41380-018-0321-0 OpenAlex: https://openalex.org/W2951588804
    Crossref OpenAlex OpenCitations
  15. Laureen Smith , Alai Tan , Janna D. Stephens , David Hibler , Sonia A. Duffy (2019). Overcoming Challenges in Multisite Trials . Nursing Research, 68(3), 227-236. Ovid Technologies (Wolters Kluwer Health).
    Type: Article DOI: 10.1097/nnr.0000000000000324 OpenAlex: https://openalex.org/W2942021573
    Crossref OpenAlex OpenCitations
  17. Diana Schendel , Anne M. Roux , ELIZABETH M. HASSRICK , Kristen Lyall , Lindsay Shea , Giacomo Vivanti et al. (2022). Applying a public health approach to autism research: A framework for action . Autism Research, 15(4), 592-601. Wiley.
    Type: Article DOI: 10.1002/aur.2689 OpenAlex: https://openalex.org/W4213426420
    Crossref OpenAlex OpenCitations