Tuesday, April 3, 2007
TUESDAY, April 3 (HealthDay News) — Experts say they've launched the first U.S. national online autism registry.
The Interactive Autism Network (IAN), which began on Monday, will link parents of children with autism with researchers in an effort to learn more about the causes, treatments and possible cures for autism.
The network will collect valuable genealogical, environmental and treatment data from parents and will inform parents about local and national research studies. Many autism studies cannot be completed because researchers aren't able to enroll enough qualified participants.
"Parents are looking for a more direct way to get involved and speed up autism research, hoping for effective treatments and eventually a cure," Dr. Paul Law, director of IAN, said in a prepared statement. "IAN will fill that research gap for parents and researchers, transforming the face of autism research as we know it."
The network's data collection and management processes are designed to ensure privacy.
"By linking parents and researchers, the IAN project aims to organize and mobilize autism research efforts in hopes of achieving results similar to the leukemia community," Dr. Gary Goldstein, president and CEO of the Kennedy Krieger Institute, which launched the network, said in a prepared statement.
"Thirty years ago, the majority of children with leukemia died. Today, the majority survive, because increased participation by a very organized research community led to discoveries of new and better treatments," Goldstein said.
There was a story about this on NPR this morning and then my friend Marianne sent me a follow-up as well – thanks for the reminder that I wanted to check this out.
This is so cool.
A place for people to come together, share information & experiences, plus give & get support. A way to link parents and researchers. It looks like there is tons of interesting stuff on there…always thirsty for more information.