The Rhode Island Consortium for Autism Research and Treatment (RI-CART) is trying to enroll 2000 kids and adults with autism spectrum disorders in a confidential statewide registry.
Researchers from Brown University, Bradley, and Women and Infants Hospital hope to gather data from registrants to conduct multiple studies over the coming years. Why?
According to the group:
"The data collected from the group will help identify genes involved in autism spectrum disorders (ASDs) and related developmental disorders. These discoveries will help explain the medical causes of autism, improve abilities to make an early diagnosis and potentially guide treatments. A clinical assessment will also be conducted, and enrollment will help to support future studies. Additional information collected about health care and services for adults with ASD will help to understand satisfaction with, and barriers to, receiving care in this population."
In other words, they want to learn what causes autism and how to treat it better, earlier.
I've interviewed people with some of the organizations involved and think this might be a good opportunity for you or a loved one to feel a part of advancing our understanding of this spectrum of disorders, many of which we know little about treating and managing over a lifetime. Plus, giant pools of data like this one are gold for scientists. Generations of researchers have been able to slice and dice other such data sets (think of the Framingham Heart Study), which become a rich source for new investigations.