|Project Title||Principal Investigator||Institution|
|Prometheus Research, LLC||Contract||Prometheus Research, LLC|
|Creating the Developmental-Behavioral Pediatrics Research Network||Blum, Nathan||Children's Hospital of Philadelphia|
|Autism Treatment Network (ATN)||Staff Member||Autism Speaks (AS)|
|IACC Strategic Plan Objective||2008||2009||2010||2011||2012||Total|
|Enhance networks of clinical research sites offering clinical care in real-world settings that can collect and coordinate standardized and comprehensive diagnostic, biological (e.g., DNA, plasma, fibroblasts, urine), medical, and treatment history data that would provide a platform for conducting comparative effectiveness research and clinical trials of novel autism treatments by 2012.
IACC Recommended Budget: $1,850,000 over 1 year
|7.N. Funding: The recommended budget was met. Significantly more than the recommended minimum budget was allocated to projects specific to this objective.
Progress: Autism Speaks' ATN is a care network that also has research capabilities. The ATN has a collection of biological samples collected from patients who have sought care at the ATN. However, these samples are not targeted toward research use because the samples are not broadly shared like those from other repositories and the samples were not collected systematically. As the ATN has progressed in its work, it has shifted away from the goal of creating a repository to a new focus on developing clinical guidelines, especially in the area of co-occurring conditions. Several guidelines have been published. Another network, the Interactive Autism Network (IAN), has piloted a new rapid method of conducting "virtual" clinical trials of low-risk or "safe" treatments. For example, IAN conducted a trial on omega 3 fatty acids â a commonly used dietary supplement - across 40 states in 10 weeks, demonstrating the value of using interactive research networks for these types of trials.
Remaining Gaps, Needs and Opportunities: Clinical and patient social networks represent new ways to conduct research ("practice to research"), as well as a path for evaluating interventions that do not require extensive safety testing (e.g., alternate diets or technological interventions) quickly using large social networks.