Enhancing multi-site autism research through the development of a collaborative data platform.
A new, no-cost REDCap platform with autistic input lets autism teams launch multi-site studies in days, not months.
01Research in Context
What this study did
Sappok et al. (2024) built a new online home for autism studies. They call it the ICR platform.
The tool gives teams a shared REDCap space, a ready-made participant list, and input from autistic reviewers.
What they found
The paper only shows the blueprint. No new data or outcomes are reported yet.
How this fits with other research
Robertson et al. (2013) did the first big step. Their iCARE system linked national registries across countries. T et al. now add a ready-to-use REDCap kit any lab can join.
McCleery (2015) warned that tech autism studies often stall at the pilot stage. The new platform answers that call by giving teams a shared workspace from day one.
Bilet-Mossige et al. (2026) plan to run a large online teacher-training trial. A tool like ICR could host their multi-site data and speed up recruitment.
Why it matters
If you run multi-site autism projects, you now have a free, autistic-reviewed backbone. You can skip building your own server, share forms across states, and find families faster. Sign up, upload your protocol, and start collecting data the same week.
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02At a glance
03Original 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.
Autism research : official journal of the International Society for Autism Research, 2024 · doi:10.1002/aur.3167