The free sharing of research study results and data is a lofty goal that can help accelerate scientific research. NDAR—the NIH National Database for Autism Research is a relatively new organization that is attempting to do just that.
NDAR is a unique project, in that it takes research results and data from autism studies and houses them in a common database, making it available for other researchers in the future. This means that research studies sponsored by NIH-recognized research institutions will have an available pool of research available to them.
For example, the long and costly process of diagnosing an individual with autism can result in lower numbers of participants in autism research studies. Recruiting typically developing children can also be difficult. This means that autism studies may have fewer participants than studies of other disorders. With NDAR, that information will already be available, allowing a richer study.
I spoke with Dan Hall, Manager of NDAR, and parent of an autistic child himself. He told me a little bit about NDAR and how it can help parents of children with autism.
He told me that NDAR has already started to collect data and will begin to share it this September. Begun in earnest in 2007, the people at NDAR expect to be able to start rich dataset sharing in 2012, when many of the original grants contributing to NDAR will end. NDAR has partnered with the Autism Science Foundation to put on the Fore Autism Golf Tournament, proceeds from which will help fund the data sharing.
“Better science will result in better treatments,” Hall told me, going on to say that NDAR hopes to provide research information to the public as well as to researchers and scientific publications.
“When a breakthrough happens, we want parents to know about it,” he said. “Parents, out of desperation, often try different treatments, possibly helpful but possibly not—and sometimes harmful. I think NDAR can bridge the gap between the science and getting the information directly, allowing the general public to be better informed.”
There are several other uses for a tool such as NDAR, Hall explained. It will standardize the data collected between research sites so that data can be easily shared. Also, because researchers will be sharing all the underlying data, it enables other researchers to corroborate—or refute—research results.
Furthermore, younger, less well-established researchers will have the opportunity to have their ideas funded because of this access to clinical data. “Providing a means to get more quality applications will result in more funding directed toward autism,” said Hall.
Made up of a small group headed by NIMH Associate Director Dr. Michael Huerta, the NDAR team includes three parents of children with autism as well as an adult with autism.
“We really do have the support of the NIH and the scientists,” says Hall. “It is really a collaborative project. Parents working with scientists and NIH employees, all trying hard to help improve the lives of those affected.”