A new database pools health registry data from seven countries, dramatically boosting sample sizes for epidemiological studies of autism. The virtual tool, built by an international consortium of researchers, allows them to effectively compare data across populations.
“This is a first for autism,” says Diana Schendel, professor of psychiatric epidemiology at Aarhus University in Denmark, who spearheaded the project. Dubbed the International Collaboration for Autism Registry Epidemiology (iCARE), the project yokes together data from population-based health registries in Denmark, Finland, Israel, Norway, Sweden and Western Australia, as well as data from California.
National health registries are a boon for epidemiological research — both in autism and other fields. But there have been few attempts to combine data from different countries, in part because of strict regulations that prohibit the information from being transported outside the countries of origin.
“In principle, this kind of data collaboration should have been done a long time ago, but no one has been ambitious enough tackle the logistical and technical challenges,” says Brian Lee, assistant professor of epidemiology and biostatistics at Drexel University in Philadelphia. Lee has conducted autism studies using the Swedish or Danish national registries individually, but has not combined the data. He is not a member of iCARE.
The resource was launched in May 2009 with the help of a four-year, $1.2 million grant from the research and advocacy organization Autism Speaks. It pools data from more than 80,000 individuals with autism, from a total of about 10.8 million births between 1967 and 2009, including factors such as birth weight, birth order and age of diagnosis.
Most analyses are likely to focus on a smaller range of birth years in which the data of interest are represented across all the sites.
“iCARE can be analyzed on an iPad at Starbucks anywhere around the globe, and it’s safe and secure,” says Abraham Reichenberg, professor of psychiatry at the Icahn School of Medicine at Mount Sinai in New York and a member of the consortium. The group is open to considering applications from researchers who have ideas for using the resource, he adds.
Researchers often share large datasets by physically transferring them to a central location, but this was not possible for the national and state health registries iCARE intended to combine. The group’s first task was to devise a simple way for everyone to access the data that would still allow researchers complete control of the database within their home country.
“When we started out, it was very much, ‘Let’s see if we can do this,’” says Kim Carter, associate professor of bioinformatics at the Telethon Institute for Child Health Research in Perth, Australia, one of the researchers who led the development of the data analysis system.