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Kennedy Krieger Institute launches first national online autism registry
April 02, 2007The Interactive Autism Network to accelerate autism research by linking researchers and families nationwide
(Baltimore, MD)—Kennedy Krieger Institute today announced the launch of the Interactive Autism Network (IAN) - the first national online autism registry - at www.IANproject.org. Parents are filled with questions about autism, and, unfortunately, researchers are still struggling with many of the same questions. IAN brings these two groups together in a way that's never been done before, through an online registry, to find answers.
Designed to drive autism research forward more quickly and efficiently, IAN will facilitate the exploration of causes, treatments and the search for a possible cure to this puzzling disorder. The Kennedy Krieger project is spearheaded by the husband and wife research team of Drs. Paul and Kiely Law, physicians by training and parents of a 13-year-old son with autism. The IAN project will link researchers to parents, the people who know the most about their child, in two important ways:
Data Collection-Parents of children with autism will be engaged online, providing valuable genealogical, environmental and treatment data without having to leave their home or office. By the end of the year, IAN's goal is to have the largest pool of family-provided data on autism, enabling researchers to explore hypotheses and search for parallels among affected children in ways that have not been previously possible.
Research Recruitment-IAN will match parents of children with autism with local and national IRB-approved research studies for which they are uniquely qualified. Each year, many autism studies are not completed because scientists cannot find enough qualified participants in a timely manner. By facilitating the process of research recruitment, IAN aims to remove this stumbling block.
"Parents are looking for a more direct way to get involved and speed up autism research, hoping for effective treatments and eventually a cure," said Dr. Paul Law, Director, Interactive Autism Network at the Kennedy Krieger Institute in Baltimore, Maryland. "IAN will fill that research gap for parents and researchers, transforming the face of autism research as we know it."
Among the families who registered during the IAN pilot phase, 80% had never participated in any autism research. The IAN project will utilize the power and reach of the Internet, which is widely available regardless of income, education, race and ethnicity, to significantly increase family participation. In the long-term, this new research approach may impact not only autism research, but how other disease states are studied as well.
To protect participant confidentiality, the data collection and management processes throughout the site are carefully designed to ensure privacy and maintain the highest level of medical and scientific research ethics.
In addition to collecting data and recruiting participants for research, the IAN project hopes to engage the entire autism community - from parents to policy makers to the media - in an online meeting place where they can become more knowledgeable consumers of autism research. This arm of the IAN project provides consumer-friendly, evidence-based information about autism, explains the value of research in general, and gives updates on current and future research studies.
"By linking parents and researchers, the IAN project aims to organize and mobilize autism research efforts in hopes of achieving results similar to the leukemia community," said Dr. Gary Goldstein, President and CEO of the Kennedy Krieger Institute. "Thirty years ago, the majority of children with leukemia died. Today, the majority survive because increased participation by a very organized research community led to discoveries of new and better treatments."
IAN is funded by a grant from Autism Speaks, a non-profit organization dedicated to increasing awareness about the growing autism health crisis and raising funds for critical autism research.
"We are proud to be funding this important initiative and excited about its potential to not only collect critical data, but also connect families and researchers nationwide in order to speed the search for the causes, better treatments and a cure for autism," said Mark Roithmayr, president of Autism Speaks.
Kennedy Krieger Institute
Data Collection-Parents of children with autism will be engaged online, providing valuable genealogical, environmental and treatment data without having to leave their home or office. By the end of the year, IAN's goal is to have the largest pool of family-provided data on autism, enabling researchers to explore hypotheses and search for parallels among affected children in ways that have not been previously possible.
Research Recruitment-IAN will match parents of children with autism with local and national IRB-approved research studies for which they are uniquely qualified. Each year, many autism studies are not completed because scientists cannot find enough qualified participants in a timely manner. By facilitating the process of research recruitment, IAN aims to remove this stumbling block.
"Parents are looking for a more direct way to get involved and speed up autism research, hoping for effective treatments and eventually a cure," said Dr. Paul Law, Director, Interactive Autism Network at the Kennedy Krieger Institute in Baltimore, Maryland. "IAN will fill that research gap for parents and researchers, transforming the face of autism research as we know it."
Among the families who registered during the IAN pilot phase, 80% had never participated in any autism research. The IAN project will utilize the power and reach of the Internet, which is widely available regardless of income, education, race and ethnicity, to significantly increase family participation. In the long-term, this new research approach may impact not only autism research, but how other disease states are studied as well.
To protect participant confidentiality, the data collection and management processes throughout the site are carefully designed to ensure privacy and maintain the highest level of medical and scientific research ethics.
In addition to collecting data and recruiting participants for research, the IAN project hopes to engage the entire autism community - from parents to policy makers to the media - in an online meeting place where they can become more knowledgeable consumers of autism research. This arm of the IAN project provides consumer-friendly, evidence-based information about autism, explains the value of research in general, and gives updates on current and future research studies.
"By linking parents and researchers, the IAN project aims to organize and mobilize autism research efforts in hopes of achieving results similar to the leukemia community," said Dr. Gary Goldstein, President and CEO of the Kennedy Krieger Institute. "Thirty years ago, the majority of children with leukemia died. Today, the majority survive because increased participation by a very organized research community led to discoveries of new and better treatments."
IAN is funded by a grant from Autism Speaks, a non-profit organization dedicated to increasing awareness about the growing autism health crisis and raising funds for critical autism research.
"We are proud to be funding this important initiative and excited about its potential to not only collect critical data, but also connect families and researchers nationwide in order to speed the search for the causes, better treatments and a cure for autism," said Mark Roithmayr, president of Autism Speaks.
Kennedy Krieger Institute
Autism Current Events and Autism News RSSM.I.N.D. Institute researchers find important clue to learning deficit in children with autism
A study by researchers at the UC Davis M.I.N.D. Institute has discovered an important clue to why children with autism spectrum disorders have trouble imitating others: They spend less time looking at the faces of people who are modeling new skills.
Survey confirms parents' fears, confusion over autism
The first national survey of attitudes toward autism reveals that a small but significant percentage of people still believe the disease is caused by childhood vaccines. The survey of 1000 randomly selected adults was conducted for the Florida Institute of Technology.
UCR researchers propose minocycline as a promising drug for patients with Fragile X syndrome
A UC Riverside-led team of biomedical scientists has found that a readily available drug called minocycline, used widely to treat acne and skin infections, can be used to treat Fragile X syndrome, the most common inherited cause of mental impairment and the most common cause of autism.
Groundbreaking findings on autism to be presented at Carnegie Mellon international symposium
Today's autism research draws on a variety of scientific disciplines, from genetics to functional magnetic resonance imaging (fMRI) to neural development. At the 35th Carnegie Symposium on Cognition, "Development and Brain Systems in Autism," 16 of the world's most prominent autism researchers will present their latest groundbreaking findings on the disorder and discuss the direction of future study that will continue to improve scientists' understanding of autism.
Toddlers' focus on mouths rather than on eyes is a predictor of autism severity
Scientists at Yale School of Medicine have found that two-year-olds with autism looked significantly more at the mouths of others, and less at their eyes, than typically developing toddlers. This abnormality predicts the level of disability, according to study results published in the Archives of General Psychiatry.
Rare genetic disorder gives clues to autism, epilepsy, mental retardation
A rare genetic disorder called tuberous sclerosis complex (TSC) is yielding insight into a possible cause of some neurodevelopmental disorders: structural abnormalities in neurons, or brain cells.
Aberrations in region of chromosome 1q21.1 associated with broad range of disorders in children
Researchers have discovered a submicroscopic aberration in a particular region of human chromosome 1q21.1 that appears to be associated with a variety of developmental disorders in children.
Study firmly shows no connection between measles, mumps, rubella (MMR) vaccine and autism
In a case-control study, the presence of measles virus RNA was no more likely in children with autism and GI disturbances than in children with only GI disturbances.
Gene associated with pair-bonding in animals has similar effects in human males
Variation in the gene for one of the receptors for the hormone vasopressin appears to be associated with how human males bond with their partners, according to an international team of researchers.
The first autism disease genes
The autistic disorder was first described, more than sixty years ago, by Dr. Leo Kanner of the Johns Hopkins Hospital (USA), who created the new label 'early infantile autism'.
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