CHICAGO. (Ivanhoe Newswire) –Autism spectrum disorders affect one in 68 people. Now researchers are collecting information and DNA samples from 50,000 people with autism and their family members, and they’re sharing that information with other top autism experts and researchers in the nation. They believe that such a large database of information will start to unravel some of the genetic mysteries behind the disorder.
With the swipe of a cotton swab, Ben Tarasewicz, 14, is providing researchers a valuable piece of the autism puzzle: his DNA.
Ben’s mother, Andrea, told Ivanhoe that she believes, “Any information they can get from this that will help him or the next person, it’s what we all should be doing.”
The SPARK autism study, which stands for Simons Foundation Powering Autism Research for Knowledge, is collecting medical and behavioral information, along with DNA samples.
Latha Soorya, PhD, an autism researcher at Rush University Medical Center in Chicago, explained, “Simply by saying that we need 50,000 people with autism to be registered we’re acknowledging that there’s so much more to know. And we need all of these people in this massive database.”
Having studied autism spectrum disorders for 25 years, Soorya believes a study of this scale will allow researchers to answer exactly what makes up the spectrum and why some people fall on it.
“That’s gonna speed up research in a way that we don’t have the ability to do now,” Soorya told Ivanhoe.
Researchers used to know of only one or two genes that played a role in autism. To date, 50 genes have been identified. Researchers believe, by the end of the study, it’s possible they will have identified 300 genes or more, which will give them a better understanding of how genetics, biology and environment all play a role.
“The whole thing is going to make it easier for somebody else because the day-to-day grind is not an easy one,” detailed Andrea.
SPARK researchers are still looking for more people with autism and their families to sign up for the study. You can even do it online and receive a free sample collection kit that you can mail in. Those who participate will have access to care and support groups where they can share information and learn about any new developments researchers make along the way. You can go to sparkforautism.org for more information.
Contributors to this news report include: Cyndy McGrath, Supervising Producer; Jessica Sanchez, Field Producer; Milvionne Chery, Assistant Producer; Brent Sucher, Editor; Tony D’Astoli, Videographer.
TOPIC: Unraveling the Mystery of Autism: SPARK Study
REPORT: MB #4163
BACKGROUND: The U.S. Centers for Disease Control estimates one in 68 Americans have autism; some recent surveys indicate those numbers even higher. Now, a landmark autism research project aims to increase the speed of research and advance the public’s understanding of autism. It’s called SPARK – and it stands for “Simons Foundation Powering Autism Research for Knowledge”. Until now, only a small number of individuals and families affected by autism have ever participated in research. SPARK will provide researchers with medical and genetic information from tens of thousands of individuals and families affected by autism. Information from the study will help identify genetic and non-genetic factors that contribute to autism spectrum disorder. Once they consent, participants in the study share a DNA sample; a saliva collection kit is sent to their home and then mailed to a lab for analysis. Samples can be provided by spitting in a tube or swabbing the cheeks or gums. Because this may be painful or uncomfortable for someone with autism, SPARK released a video to help demonstrate. A total of 21 university-affiliated clinical sites and numerous national and local autism community organizations across the U.S. are partnering with SFARI, the Simons Foundation Autism Research Initiative to help recruit participants and spread the word about this study. De-identified genetic and phenotypic data will be made available to any qualified researcher throughout the duration of the project, and researchers will have the opportunity to contact participants for potential enrollment in their research and clinical studies.
SYMPTOMS: The severity of these symptoms varies greatly but all people with autism have some symptoms in the areas of:
1) Social interactions and relationships: problems in developing nonverbal communication skills, such as eye-to-eye gazing, facial expressions and body posture.
2) Failure to establish friendships with children the same age
3) Lack of interest in sharing enjoyment, interests or achievements with other people.
4) Lack of empathy. People with autism may have a hard time understanding other peoples’ emotions such as pain or sorrow.
5) Limited interests in activities or play: an unusual focus on pieces (for instance, rather than focusing on a toy car, the child might focus on the wheels of the car)
6) Delay in, or lack of, learning to talk. As many as 40 percent of people with autism never speak.
(Source: http://www.webmd.com/brain/autism/autism-symptoms#1 )
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