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 Science News and Science Current Events Tag Cloud This tag cloud is a visual representation of term frequencies of random science news topics with common terms grouped together and emphasized by their display size. Ethanol Arctic Ice Alcohol Antarctic Multiple Myeloma Twins Technology Nausea Amphibians Ozone Layer Tumor cell Juvenile Idiopathic Arthritis AIDS vaccine Narcolepsy Chimpanzees Surface Tension Amniotic Fluid Fatty Acid Brain Cancer Post-traumatic Stress Resveratrol Hydrogen Digital Camera Collagen Opioid
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Related Autism Current Events and Autism News Articles Further gene mutations linked to autism risk Pieces in the complex autism inheritance puzzle are emerging in the latest study from a research team including geneticists from the University of Pennsylvania School of Medicine and The Children's Hospital of Philadelphia (CHOP). More gene mutations linked to autism risk More pieces in the complex autism inheritance puzzle are emerging in the latest study from a research team including geneticists from The Children's Hospital of Philadelphia, the University of Pennsylvania School of Medicine and several collaborating institutions. Tiny levels of carbon monoxide damage fetal brain A UCLA study has discovered that chronic exposure during pregnancy to miniscule levels of carbon monoxide damages the cells of the fetal brain, resulting in permanent impairment. ADHD genes found, known to play roles in neurodevelopment Pediatric researchers have identified hundreds of gene variations that occur more frequently in children with attention-deficit hyperactivity disorder (ADHD) than in children without ADHD. Measuring intellectual disability Researchers from the University of California, Davis have developed a specific and quantitative means of measuring levels of the fragile X mental retardation 1 (FMR1) protein (FMRP), which is mutated in fragile X syndrome. Study finds autistics better at problem-solving Autistics are up to 40 percent faster at problem-solving than non-autistics, according to a new Université de Montréal and Harvard University study published in the journal Human Brain Mapping. Putting a name to a face may be key to brain's facial expertise Our tendency to see people and faces as individuals may explain why we are such experts at recognizing them, new research indicates. This approach can be learned and applied to other objects as well. Common autism medication is ineffective for repetitive behaviors, study finds Citalopram (Celexa), a medication commonly prescribed to children with autism spectrum disorders (ASD), was no more effective than a placebo at reducing repetitive behaviors. Citalopram no better than placebo treatment for children with autism spectrum disorders Citalopram, a medication commonly prescribed to children with autism spectrum disorders (ASD), was no more effective than a placebo at reducing repetitive behaviors. Antidepressant ineffective against autism spectrum disorder children's obsessive behavior A new multi-center study, conducted at The Feinstein Institute for Medical Research in collaboration with five other centers throughout the country, tested the commonly prescribed antidepressant citalopram and found that it was no more effective than placebo in altering obsessive features of the condition - the spinning, rocking and repetitive behavior. More Autism Current Events and Autism News Articles |
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