The International Collaboration for Autism Registry Epidemiology (iCARE): multinational registry-based investigations of autism risk factors and trends.
iCARE is the open road map for sharing autism data across borders.
01Research in Context
What this study did
Robertson et al. (2013) built a new home for autism numbers. They call it iCARE.
It links birth, health, and school records across many countries.
The goal is to let scientists ask big questions about autism risk and trends.
What they found
The paper does not give new facts about autism.
It only shows the blueprint for the data house.
No numbers, just the plan.
How this fits with other research
Sappok et al. (2024) picked up the torch. Their 2024 AIR-P platform adds autistic reviewers and a ready REDCap kit. It is the next version of the same idea.
Sivaraman et al. (2020) looked at global ABA telehealth. The studies they reviewed could one day live inside iCARE, giving real-world service data.
Mae Simcoe et al. (2018) and Cervantes et al. (2019) show how hospital care-pathway data can feed the registry. Length-of-stay and restraint counts are exactly the kind of records iCARE wants to pool.
Why it matters
You can’t run a single-subject design on iCARE. But you can use it to see the big picture.
Point parents, funders, and policy teams to these papers when they ask, “Where is the evidence?”
The registry is the shovel-ready path to answers about who gets autism services, where, and how well they work.
Want CEUs on This Topic?
The ABA Clubhouse has 60+ free CEUs — live every Wednesday. Ethics, supervision & clinical topics.
Join Free →Add the iCARE and T et al. (2024) papers to your evidence folder for grant or policy talks.
02At a glance
03Original abstract
The International Collaboration for Autism Registry Epidemiology (iCARE) is the first multinational research consortium (Australia, Denmark, Finland, Israel, Norway, Sweden, USA) to promote research in autism geographical and temporal heterogeneity, phenotype, family and life course patterns, and etiology. iCARE devised solutions to challenges in multinational collaboration concerning data access security, confidentiality and management. Data are obtained by integrating existing national or state-wide, population-based, individual-level data systems and undergo rigorous harmonization and quality control processes. Analyses are performed using database federation via a computational infrastructure with a secure, web-based, interface. iCARE provides a unique, unprecedented resource in autism research that will significantly enhance the ability to detect environmental and genetic contributions to the causes and life course of autism.
Journal of autism and developmental disorders, 2013 · doi:10.1007/s10803-010-1132-6