Those looking to better understand and treat Autism Spectrum Disorders (ASD) now have a powerful new weapon in their fight. The US National Institute of Health (NIH) has developed the National Database for Autism Research (NDAR) a portal into multiple databases of ASD related information. NDAR provides qualified researchers a place to submit their data, and allows scientists access to this data in order to perform studies. The result is a growing site of indexed information that can track a patient’s results from different studies at different times. NDAR is the ultimate tool for those looking to further the fight against ASD. As it develops, it could provide incalculable insight into the disorder, and lead us to better understand its causes and its treatments.
What makes NDAR so promising is the scope of its data. The NDAR Central Repository was formed from the NIH’s Autism Centers for Excellence. Along with that repository, the NDAR portal provides access to several other stores of important ASD information: The Autism Genetic Research Exchange has data on 1000+ families with ASD members. 30,000 individuals are tracked in the Interactive Autism Network. 3000 records on ASD patietns are kept in the National Institute for Menal Health’s Genetics Repository. NIMH’s Transcriptional Atlas for Human Brain Disorders provides additional analysis and insight into ASD. The Pediatric MRI Data Repository has information on more than 500 normally developing children and youths. In total we are talking about many tens of thousands of records covering genetic, phenotypic, imaging, clinical, and pedigree data relevant to ASD.
Better still, NDAR has instituted several standards for data exchange and submission. The most important is the Global Unique Identifier (GUID). The GUID correlates each patient with a unique identifier code. Not only does this protect the privacy of patients, it allows indexing between studies. If an individual (or family) was part of one study for the NIH, and another for the NIMH, now their information is grouped as belonging together. This maximizes the benefit scientists can gain from the NDAR portal by allowing researchers to compare these studies in direct and meaningful ways. GUID based studies (meta-studies of the research performed by others) are really going to help squeeze all the meaningful information out of these separate databases.
Unfortunately, NDAR is not quite ready for full access. While the Central Repository is available now, the partnered databases are slowly being rolled out. The Pediatric MRI Data Repository will become linked sometime in spring 2010, and the rest will follow on an unspecified schedule.
The possible importance of NDAR is incredible. Scientists will be able to freely add and review a huge cross referenced database of information pertinent to ASD. Instead of being limited to just a few hundred patients, they now have effective access to the data of tens of thousands. That’s a big deal. NDAR’s data submission process will help keep that database full of only rigorously tested informaiton and the Data Access Committee will ensure it is only available to those with legitimate research credentials. It’s the best kind of system.
And it could really help. Take for instance, the case of Dr. Andrew Wakefield in the UK. In 1998 he published a paper in The Lancet (a very prestigious journal) that more or less linked increased occurrences of Autism to vaccines. This lead to a huge dip in British children receiving the Measles vaccine due to parental concern, and measles has rebounded in that country. The paper was eventually shown to be in error, but only after a long struggle. After 12 years of steady petitioning from concerned scientists, pressure from the BMJ (another journal), and the recantation of 13 of Wakefield’s fellow authors, The Lancet finally denounced the paper. Wakefield and two authors who continue to support the paper were recently stripped of their license to practice medicine in the UK. A linked database of ASD information could have more easily revealed the errors in Wakefield’s work and kept his paper from causing such terrible consequences.
Bioinformatics is going to be the key to unlocking the potential of the vast global network of medical research. Along with Biobanks and other repositories of samples, databases like NDAR will allow scientists unparalleled opportunities for performing new and insightful studies. We’re going to see better faster research for ASD, and for other disorders that develop similar portals. The future of medicine is going to be filled with vast stores of data as individuals and doctors take advantage of noninvasive and continuous health monitoring systems. Sorting that data, and analyzing it, will be a major endeavor for the 21st century that could drastically improve our healthcare. In the meantime, I have high hopes for NDAR as it completes its launch this year and continues to grow in the future. Who knows, maybe the data that finally helps us conquer ASD is already there, waiting to be discovered.
[image credit: NIH NDAR]