Since its launch earlier this year, the first online autism registry in the United States has garnered a diverse group of participants and a treasured commodity.
Among the more than 14,000 registrants to the Interactive Autism Network (IAN), there are six sets of triplets, 44 sets of identical twins, and 162 sets of fraternal twins.
“Twins are a cherished resource for understanding autism because they help you get at the issue of environmental versus genetic factors,” Dr. Paul Law, director of the network, said in an interview. “If identical twins aren't the same, then presumably there is some environmental factor that is determining that difference.”
Preliminary data show that the concordance rate of autism among identical twins registered with IAN is about 80%–85%, which falls within the range identified in previous autism twin studies. Concordance rates are in the upper 20% range for fraternal twins. Typically, concordance has been reported around 10% for fraternal twins, prompting the IAN staff to invite experts to look at why this may be, Dr. Law said. The registry was launched in April.
Another statistic of interest to researchers is the growing number of families IAN is attracting who are new to autism research. Among the 250 families that participated as pilot registrants, 80% had never participated in any autism research.
That number has risen to 86% among current registrants, and is expected to reach 90% as news of the project reaches more affected families.
The ability to reach new participants is a result in part of the time and travel constraints that are overcome by Internet participation. Families have registered from all 50 states and the District of Columbia, as well as such exotic locations as Guam, American Samoa, the Marshall Islands, and Palau.
But the success also speaks to the often underestimated desire of families of children with autism spectrum disorders to be part of the solution, Dr. Law said.
What also has become evident in the short history of IAN is the need to register adults with autism spectrum disorders. Registration is now limited to infants and children aged 18 years and younger, as a result of logistical constraints such as competency, guardianship, and the reliability of self-reported data. The IAN staff, based at Baltimore's Kennedy Krieger Institute, is now working with experts in adult autism to overcome these obstacles.
“It's critical, because the one thing the mother wants to know when they come to me as a provider and the baby is 18 months old is what that child is going to look like at 22 or 24 years of age, and we have few information sources to answer that,” Dr. Law said.