2014

Kennedy Krieger Institute Launches First National Online Autism Registry The Interactive Autism Network to Accelerate Autism Research by Linking

Researchers and Families Nationwide



    BALTIMORE, April 2 /PRNewswire-USNewswire/ -- Kennedy Krieger Institute
 today announced the launch of the Interactive Autism Network (IAN) -- the
 first national online autism registry -- at http://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.
     About Autism
     Autism spectrum disorders (ASD) is the nation's fastest growing
 developmental disorder, with current incidence rates estimated at 1 in 150
 children. This year more children will be diagnosed with autism than AIDS,
 diabetes and cancer combined, yet profound gaps remain in our understanding
 of both the causes and cures of the disorder. Continued research and
 education about developmental disruptions in individuals with ASD is
 crucial, as early detection and intervention can lead to improved outcomes
 in individuals with ASD.
     About the Kennedy Krieger Institute
     Internationally recognized for improving the lives of children and
 adolescents with disorders and injuries of the brain and spinal cord, the
 Kennedy Krieger Institute in Baltimore, MD serves more than 12,000
 individuals each year through inpatient and outpatient clinics, home and
 community services and school-based programs. Kennedy Krieger provides a
 wide range of services for children with developmental concerns mild to
 severe, and is home to a team of investigators who are contributing to the
 understanding of how disorders develop while pioneering new interventions
 and earlier diagnosis. For more information on Kennedy Krieger Institute,
 visit http://www.kennedykrieger.org.
     About Autism Speaks
     Autism Speaks is dedicated to increasing awareness of autism spectrum
 disorders, to funding research into the causes, prevention, treatments and
 cure for autism, and to advocating for the needs of affected families. It
 was founded in February 2005 by Suzanne and Bob Wright, the grandparents of
 a child with autism. Bob Wright is Vice Chairman and Executive Officer,
 General Electric, and Chairman and CEO, NBC Universal. Autism Speaks has
 merged with both the National Alliance for Autism Research (NAAR) and Cure
 Autism Now (CAN), bringing together the nation's three leading autism
 advocacy organizations. To learn more about Autism Speaks, please visit
 http://www.autismspeaks.org.
 
 

SOURCE Kennedy Krieger Institute

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