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Science & Research

State registry to enhance autism research

Comprehensive information on patients will improve awareness and treatment availability

By
Staff Writer
Friday, September 13, 2013

University scientists are key players in a new program aiming to advance autism research by creating a statewide registry of patients who have been diagnosed as on the spectrum. Spearheaded by the Rhode Island Consortium of Autism Research and Treatment, also known as RI-CART, the program gained funding through a variety of sources, including two recent grants totaling over $1 million.

RI-CART’s mission is to “improve the lives of Rhode Islanders with autism spectrum disorders by promoting collaborative, cutting-edge research, improving health care and support services and providing data-driven education and advocacy,” according to the organization’s website. The 14-member organization, including Brown University and Bradley Hospital,  comprise an interdisciplinary group of researchers, physicians and educators.

RI-CART currently has its sights set on creating a statewide registry of autism patients which researchers could use to learn more about the neurologic disorder, said Stephen Sheinkopf, co-director of RI-CART and assistant professor of psychiatry and human behavior and pediatrics.

The registry will include patients’ demographic information, medical history, official diagnosis, severity of symptoms and even information biological samples, said Sheinkopf, whose research focuses on the early identification of autism in children.

“What this is going to allow us to do is to match up patients with this condition to relevant research studies,” Sheinkopf said.

Rhode Island offers a unique platform for this kind of statewide registry because of its small size, Sheinkopf said. But the state’s size also makes it difficult to create a registry representative of the nation as a whole, he added.

An April grant of $1.2 million from the Simons Foundation, along with seed funding from a variety of other sources, will provide the infrastructure to register the first 2,000 patients, said Beth Jerskey, research coordinator for RI-CART and assistant professor of psychiatry and human behavior. RI-CART’s ultimate goal is to register all of Rhode Island’s approximately 10,000 autism patientswithin the next 10 years, she added.

Although this project provides a hopeful outlook for the future of autism research, it is still in its infancy with only about 50 patients registered so far, Sheinkopf said.

The continuation and completion of the registry will require further funding, said Joanne Quinn, director of The Autism Project, an autism education and advocacy organization that serves communities in and around RI and MA.

“Autism remains one of the lowest funded areas of research,” she added.

Autism rates in children have risen in recent years, which means “the adult system is going to be hit by a tsunami wave that they’re not ready for,” Quinn said.

“RI-CART will also serve as an intellectual meeting space to exchange ideas and to foster collaboration,” Sheinkopf wrote in an email to The Herald.

In addition to the Simons Foundation grant, RI-CART received a $53,000 grant from the Rhode Island Foundation. Additional seed funding comes from the Brown Institute for Brain Sciences, the Norman Prince Neuroscience Institute, Bradley Hospital, the Brown Department of Psychiatry and Human Behavior and the Women and Infants Hospital Department of Pediatrics, Sheinkopf said.

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  1. It’s hard to understand what good this registry will do. There’s no mention here of the current autism rate, which is one in every 50 U.S. CHILDREN, one in 31 among boys alone. If the goal is raising awareness, I think that’s already happening. What we really need are answers.

    Why is the autism rate based only on studies of
    children?

    Why can’t anyone show us a comparable rate among
    adults?

    Why aren’t officials alarmed about a serious
    disorder affecting more and more children that they can’t explain?

    Why hasn’t the Center for Disease Control and
    Prevention ever called autism a crisis?

    How many more decades will autism officially have no
    known cause or cure?

    Why can’t doctors tell a new mother with a healthy
    baby how she can prevent that child from also losing learned skills and
    regressing into autism by age two?

    Anne Dachel, Media editor: Age of Autism

  2. Joanne Quinn said, ‘Autism rates in children have
    risen in recent years…’

    In truth, they’ve exploded. A once rare disorder is
    now so common that everyone knows someone with an affected child and officials
    show no real interest in why it’s happening.

    Here’s the most important part of this: ‘The adult system is going to be hit by a tsunami wave that they’re
    not ready for.’

    These children will age out of school and become
    dependent on the taxpayers for their support and care. Right now, there isn’t
    significant population of adults with autism. That will be changing. Maybe
    when we’re all paying for this disaster, we’ll honestly and urgently look at
    what’s causing it.

    Anne Dachel, Media editor: Age of Autism

  3. victorpavlovic says:

    Try counting the actual and ever increasing autism rate, and then ask the question why is it so high, and why does it continue to increase, and realize that the actual cause is vaccines even though the big pharma sponsored media repeats such misinformation that their is no link.

  4. Because Anne Dachel wants to blame vaccines for the apparent increase in the prevalence of diagnosed cases of ASD, she has to completely reject the evidence that adults with autism actually exist, although the may have not been diagnosed and thus may be lacking the help that they need and deserve. Dachel wants to continue to deny care to these deserving people, simply because (as someone who trained to teach history to adolescents) she surely knows more than the experts who trained in medicine, developmental biology, or neurobiology and devoted their lives to the study of autism. No, she’s right, and they’re wrong–she read it on the internet.

    Accordingly, Dachel rejects the only serious attempt to discover the prevalence of adults with ASD–because it found that the prevalence of ASD in middle-aged and older people is comparable to the prevalence of ASD in children–so ASD can’t be due to MMR, thimerosal, “too many too soon,” etc.

    Dachel also reject recent research results that suggests that ASD begins to develop long before birth, The placentas from pregnancies that produced children at risk for ASD (that is, the younger siblings of children with ASD) have abnormal characteristics that differ from the placentas from low-risk pregnancies in ways that the investigators believe reflect genetic differences. Boys who later regress into ASD have followed an abnormal brain growth trajectory since at least the first time point investigated (six months) in a manner that suggests that abnormal development began early in pregnancy. Children who later develop ASD have abnormal accumulations of fluid in their brains by the first time point imaged (four months) of a type that has been previously shown to begin before birth. Children with ASD who were examined bronchoscopically have abnormal branching of their airways in a fashion that must develop in the first months gestation. Children who appeared normal until they developed seizure disorders and autistic symptoms have been repeatedly shown to have pre-existing mutations that cause the syndrome whether or not the child (or the laboratory animal) has been recently vaccinated. Many factors that are known to increase the risk that a child will develop ASD affect early gestational development.

    Dachel seems to believe that puberty isn’t the result of genetically-determined developmental changes–no, puberty results from starting middle school, just like autism must be caused by vaccines (or visits to Grandma) that happened to occur before parents began to notice some of the signs.

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