 |
|
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 RSSAutism 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
 |
Ten Things Every Child with Autism Wishes You Knew by Ellen Notbohm (Author) Every parent, teacher, social worker, therapist, and physician should have this succinct and informative book in his/her back pocket. Framed with both humor and compassion, the book defines the top ten characteristics that illuminate the minds and hearts of children with autism. Ellen’s personal experiences as a parent, an autism columnist, and a contributor to numerous parenting magazines coalesce to create a guide for all who come in contact with a child on the autism spectrum. Don’t buy just one of this book — buy one for everyone who interacts with your child! Give the gift of understanding. |
 |
Choiceworks Visual Support System by Bee Visual LLC Choiceworks is a learning tool that uses a combination of 3 structured boards, visual images and built in choice making opportunities to effectively help children complete daily routines (morning, day & night), understand & control their feelings and improve their waiting skills (taking turns, not interrupting). The included companion books help teach your child about their daily schedule, dealing with transitions and managing their feelings. "The ChoiceworksTM Visual Support System provides exactly the kind of communication support that enables children to follow routines, make choices and demonstrate appropriate behavior. This system is a fabulous tool to help children participate more effectively with greater independence." Linda Hodgdon, M. ED, CCC-SLP Author of Visual Strategies... |
 |
Autism Spectrum Disorders: The Complete Guide to Understanding Autism, Asperger's Syndrome, Pervasive Developmental Disorder, and Other ASDs by Chantal Sicile-Kira (Author), Temple Grandin (Foreword) Winner of the 2005 Autism Society of America's Outstanding Literary Work of the Year Award Based on the author's personal and professional experiences, this comprehensive and accessible source covers all aspects of autism conditions, including Asperger's Syndrome and Pervasive Developmental Disorder. |
 |
1001 Great Ideas for Teaching and Raising Children with Autism Spectrum Disorders by Veronica Zysk (Author), Ellen Notbohm (Author) Parents and professionals can now bypass countless hours spent seeking answers to the mystifying day-to-day challenges of autism. In a snappy, can-do format, this insightful book offers page after page of try-it-now solutions that have worked for thousands of children grappling with social, sensory, behavioral, and self-care issues, plus many more. |
 |
Phonics Word Master by Zizzle Phonics Word Master is designed to teach your child the fundamental building blocks of reading: letter names, letter sounds, and beginning spelling, using the Hooked on Phonics curriculum. Fun music and engaging animations entertain and the Skill Builder Review Button shows off what your child just learned! Features: LCD screen for visual reinforcementFull alphabet keypadSkill Builder Review ButtonSeven interactive modesIdentify Letter NamesFind Letter NamesIdentify Letter SoundsFind Letter SoundsSpell a wordSound out a wordAlphabet Learning SongRequires 3 "AA" batteries, included.Measures 10.3" W x 8"HM/ul> |
 |
Autism: The Musical Starring: Elaine Hall, Rosanne Katon, Kristen Stills, Stephen Stills Directed By: Tricia Regan Autism: The Musical follows the extraordinary and innovative acting coach Elaine Hall, five autistic children, and their parents as they improbably, heroically mount a full-length original stage production. Through trial and error, tears and laughter, these incredible families learn to communicate their feelings in song and performance, finding solace and joy in the act of creating. A veritable feast of astounding breakthroughs and heartbreaking hardship, this spellbinding film offers a full-throated celebration of kids living with this increasingly prevalent disorder. Director Tricia Regan vividly captures the individual personalities and problems of each child, from precocious Henry who talks a mile-a-minute about dinosaurs to Neal, a sensitive and articulate boy who... |
 |
Thinking in Pictures, Expanded Edition: My Life with Autism by Temple Grandin (Author) Temple Grandin, Ph.D., is a gifted animal scientist who has designed one third of all the livestock-handling facilities in the United States. She also lectures widely on autism—because Temple Grandin is autistic, a woman who thinks, feels, and experiences the world in ways that are incomprehensible to the rest of us. In this unprecedented book, Grandin delivers a report from the country of autism. Writing from the dual perspectives of a scientist and an autistic person, she tells us how that country is experienced by its inhabitants and how she managed to breach its boundaries to function in the outside world. What emerges in Thinking in Pictures is the document of an extraordinary human being, one who, in gracefully and lucidly bridging the gulf between her condition and our... |
 |
Ten Things Your Student with Autism Wishes You Knew by Ellen Notbohm (Author), Veronica Zysk (Contributor) Ellen Notbohm's first book, Ten Things Every Child with Autism Wishes You Knew, was a shot heard throughout the worldwide autism community, branded by readers as "required reading for all social service workers, teachers and relatives of children with autism." Now, for the teacher in all of us comes Ten Things Your Student with Autism Wishes You Knew. The unique perspective of a child's voice is back to help us understand the thinking patterns that guide their actions, shape an environment conducive to their learning style, and communicate with them in meaningful ways. Ten Things Your Student with Autism Wishes You Knew affirms that autism imposes no inherent upper limits on achievement, that both teacher and child "can do it." It's the game plan every educator, parent, or family member... |
 |
Since We're Friends: An Autism Picture Book by Celeste Shally (Author), David Harrington (Illustrator) Children with autism struggle to make friends and navigate social situations. However, one child can make a significant difference in the life of a child with autism by offering compassion, understanding and friendship. Since We re Friends is about two boys. One has autism, the other does not. The story of their relationship provides practical examples of how to make such a friendship work. It will help children see that their peers with autism can make a fun, genuine contribution to friendship. From the publisher: |
 |
The Autism Acceptance Book: Being a Friend to Someone With Autism by Ellen Sabin (Author), Ellen Sabin (Illustrator) The Autism Acceptance Book is an interactive, educational, and character-building book that introduces children to the challenges faced by people with autism while also supporting their personal journey toward appreciating and respecting people's differences. This book offers educational information, conversation-starters, and engaging exercises that invite children to "walk in someone else's shoes" as they learn to treat others the same ways they would like to be treated themselves. |
| © 2009 BrightSurf.com |