Kennedy Krieger Institute launches first national online autism registryApril 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 |
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| Related Autism Current Events and Autism News Articles Autism Consortium symposium draws record number of researchers, advocates, parents for autism update The Autism Consortium, an innovative collaboration of researchers, clinicians, funders and families dedicated to catalyzing research and enhancing clinical care for autism spectrum disorders (ASDs), held its fourth annual symposium on October 28th, 2009, at Harvard Medical School in Boston. Sights and sounds of emotion trigger big brain responses Researchers at the University of York have identified a part of the brain that responds to both facial and vocal expressions of emotion. Clinical tests begin on medication to correct Fragile X defect NIH-supported scientists at Seaside Therapeutics in Cambridge, Mass., are beginning a clinical trial of a potential medication designed to correct a central neurochemical defect underlying Fragile X syndrome, the most common inherited cause of intellectual disability. Lessons from flu seasons past Pregnant women who catch the flu are at serious risk for flu-related complications, including death, and that risk far outweighs the risk of possible side effects from injectable vaccines containing killed virus, according to an extensive review of published research and data from previous flu seasons. Sex-based prenatal brain differences found Prenatal sex-based biological differences extend to genetic expression in cerebral cortices. The differences in question are probably associated with later divergences in how our brains develop. Testicular tumors may explain why some diseases are more common in children of older fathers A rare form of testicular tumour has provided scientists with new insights into how genetic changes (mutations) arise in our children. CSHL-led team discovers rare mutation dramatically increasing schizophrenia risk An international team of researchers led by geneticist Jonathan Sebat, Ph.D., of Cold Spring Harbor Laboratory (CSHL), has identified a mutation on human chromosome 16 that substantially increases risk for schizophrenia. Women outperform men when identifying emotion Women are better than men at distinguishing between emotions, especially fear and disgust, according to a new study published in the online version of the journal Neuropsychologia. Study finds mercury levels in children with autism and those developing typically are the same In a large population-based study published online today, researchers at the UC Davis MIND Institute report that after adjusting for a number of factors, typically developing children and children with autism have similar levels of mercury in their blood streams. Mercury is a heavy metal found in other studies to adversely affect the developing nervous system. Scientists demonstrate link between genetic defect and brain changes in schizophrenia Researchers at the University of North Carolina at Chapel Hill School of Medicine have found that the 22q11 gene deletion - a mutation that confers the highest known genetic risk for schizophrenia - is associated with changes in the development of the brain that ultimately affect how its circuit elements are assembled. More Autism Current Events and Autism News Articles |
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