Information collected through the SPARK project will eventually be organized into a web registry that is available for researchers to use in their efforts to analyze genetic sequences for mutations or other deviations that can explain the etiology of autism spectrum disorders and hopefully lead to treatments.
Dr. Robert Annett from the UMMC Center for the Advancement of Youth is the principal investigator for the UMMC SPARK Research Team. The goal for the team in Mississippi is to recruit 2100 families to take part in the DNA sampling efforts of SPARK. Currently Mississippi is the only one of the 21 participating medical sites that is located in a state that does not have an autism research center. Annett stated that a priority for the team would be to reach families who live in traditionally underserved communities. Whether due to poverty or rural locations, many patients are underrepresented in national studies. Annett stated, “I view this as an opportunity to get Mississippi a seat at the table in national studies.”
The research team is composed of Annett as well research coordinators Kristen Callahan and Sabrina White who have already traveled hundreds of miles each to spread the work about the study. According to White and Callahan, many parents are uneasy about the study, believing it might be “too good to be true.” The genetic testing included in the SPARK project is normally very expensive as well as unlikely to be covered by many insurance plans. Since it can cost more than $1,000, families who hear that a new project will provide the testing for free, are uncertain about trusting that the project can actually accomplish all it hopes to. While privacy is a concern the SPARK project is well established at other centers outside of Mississippi and there is a process in place to protect personally identifying information.
Dr. Ian Paul is a researcher at UMMC and director of UMMC’s Center for Developmental Disorders Research. He has had previously collaborated on a study that probed a possible link between the use of antidepressants during pregnancy and autism spectrum disorders and it’s his belief that research is a form of advocacy. When he heard that a large study on autism was being conducted by the CDC in southern states but Mississippi had been excluded from the research, he was determined to be involved in the SPARK project. In a press release he stated, “We need this information. We need it desperately. We don’t even know how big a problem we have right now. We just know it’s a problem. We know from national statistics what it should be, but we don’t know if Mississippi falls within those statistics. It could be higher, lower or spot-on.” The video below talks about the inclusion of UMMC in the SPARK project, which will hopefully bring the people of Mississippi much needed information on autism, check it out.
The Clarion Ledger , UMMC, SPARK