February 12, 2010
MU Thompson Center Extends Recruiting in Landmark Autism Research Project
By Toni Lapp
Anyone who has a child with autism has at least a passing interest in research of the disorder, so I assume we are all now familiar with the 1998 study published in The Lancet medical journal by British researcher Andrew Wakefield. His work purportedly linked the measles, mumps and rubella vaccine — or MMRV — to autism and bowel disorders.
The Lancet now says it was remiss in publishing the study, and many of the co-authors have withdrawn their names from it in wake of criticism that Wakefield had a conflict of interest; he enrolled kids attending a birthday party for the study (not exactly a randomly selected population researchers would strive for); and the parents of some of the 12 autistic children in the study were recruited by a lawyer suing vaccine manufacturers.
So where does that leave those of us who yearn for clear answers in solving the puzzle of autism?
Researchers at 13 sites in North America, including the Thompson Center for Autism & Neurodevelopmental Disorders in Columbia, Missouri, are collecting DNA samples from families with a child affected by an autism spectrum disorder.
Researchers hypothesize that there are many different forms of autism. Yes, persons on the spectrum often have similar core deficits, but there is a great deal of variation in the behaviors and level of functioning among children and adults with some form of autism spectrum disorder.
“Autism is a collection of often quite distinct disorders that people have just lumped together in the past,” says Judith Miles, M.D., Ph.D., the principal investigator for the Simons Simplex project. “In the 1970s every child with leukemia was treated the same way and very few survived. However, when we figured out childhood leukemia was a number of different disorders requiring different treatment strategies, the cure rate improved to 90 percent. This is what we want to do with autism.”
The goal of the Simons Simplex Collection project is to build a repository of genetic information from families with one child affected by autism (called simplex families). Autism researchers from around the world will be able apply to use the information for controlled studies.
“Potentially, a large number of studies can come from this,” says Nicole Takahashi, project coordinator at MU’s Thompson Center. “It will be long, long term.”
In fact, preliminary studies have already been done using data from early participants. (Check back soon for updates.)
Takahashi says that the Thompson Center has so far had 120 families participate. Enrollees agree to provide blood samples from the family – biological parents, children with autism and neurotypical siblings – and fill out extensive questionnaires.
Nationwide, the 13 sites have collected data from 1,300 families. The initial goal was to enroll 2,000 families, but the study sponsor — the Simons Foundation — has extended funding to collect from 3,000 families, up until spring 2011.
Takahashi says that researchers have been grateful for the turnout so far, acknowledging that it is a serious time commitment for the families involved. Each family member receives $50 for participation.
But the end result will be studies that will stand up to peer review processes, unlike the Lancet fiasco.
“The more information, the better,” says Takahashi.
NOTE: To learn more about the study or to enroll, contact the MU Thompson Center at 573-884-1893 or send e-mail to takahashin@health.missouri.edu.
