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National Autism Network

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Research Programs

Welcome to the Research Programs section of the National Autism Network. Within this section are summaries of a number of research programs designed to facilitate researchers working towards the common goal of helping individuals on the autism spectrum. Some of these programs collect various forms of data—DNA samples, brain tissue, and clinical data—designed to expedite research studies focused on autism. The work done by these programs have led to the development of tool kits designed to help parents with the challenges of raising a child with autism, the world’s largest open-access repository of clinical and genetic information, and the discovery of specific genetic and environmental factors that influence autism. Some of these networks are currently actively seeking individuals with ASD to participate in studies that can ultimately benefit the autism community as a whole. Information on how to contact these respective programs is available within each summary.

Autism Genetic Resource Exchange: Originally established by Cure Autism Now in 1997, the Autism Genetic Resource Exchange (AGRE) is now funded by Autism Speaks and the National Institute of Mental Health. The Autism Genetic Resource Exchange is a research program that collects data on families who have two or more children on the autism spectrum.

Autism Treatment Network: The Autism Treatment Network (ATN) is a the first network of hospitals and physicians that share the common goal of improving the treatment of individuals with autism by closing the gaps between knowledge and understanding.

Autism Tissue Program: The Autism Tissue Program (ATP) is dedicated to the study of human brain tissue to further science’s understanding of how the brain is affected by autism spectrum disorder.

Autism Clinical Trials Network: Originally a flagship program of Cure Autism Now, the Autism Clinical Trials Network (ACTN) aims to expedite recruitment goals for clinical trials and decrease the time it takes to complete a clinical trial to screen and develop new treatments.

Infant Brain Imaging Study (IBIS)- The Infant Brain Imaging Study is a longitudinal research study whose participants are younger (under 12 months of age) siblings of children with an autism diagnosis. Participants receive developmental and behavioral assessments, an MRI scan of the brain, and screening for Fragile X syndrome. Participants will receive a MRI scan at 3 month of age, with subsequent periodical MRIs repeated until 24 months of age, in an effort to reveal valuable insights into the developing brain in autism.

Autism Phenome Project (APP)- Just as the genome represents all of an organism’s genes or inheritable traits, the phenome encompasses all of an organism’s phenotypic traits such as skin color, eye color, hair color, body height, etc. The Autism Phenome Project aims to collect data on 1,800 children from ages 2 to 3 ½ years old from several research sites across the country. Participants in this study will undergo an initial examination, have blood drawn, and may undergo an MRI scan. The APP is working to subtype potentially different variants (forms) of autism so that physicians may one day provide specific treatments based on the specificity of an individual’s diagnosis.

Early Autism Risk Longitudinal Investigation (EARLI)- This longitudinal study hopes to observes at least 1,200 mothers of children with autism at the start of another pregnancy and document how the newborn child develops through three years of age. Newborn children in this study will be given multiple free evaluations during critical development milestone stages, which have the potential to be able to detect the onset of autism before a regular pediatric check-up. The data collected by the EARLI study will be analyzed to determine if environmental exposures during pregnancy and early life play a role in autism, how genetics may influence the risk of developing ASDs, if there is the potential for biological markers in autism, and how the behavior of newborn siblings of children with ASD changes over time and how these behaviors may be early signs of ASD.