|Project Title||Principal Investigator||Institution|
|Interactive Autism Network (IAN)||Law, Paul||Kennedy Krieger Institute|
|Informatics - 1||McCray, Alexa||Harvard Medical School|
|Informatics - 2||Pauls, David||Massachusetts General Hospital|
|Software for collecting and managing data from Simons Simplex Collection||Prometheus Research LLC||Prometheus Research LLC|
|IACC Strategic Plan Objectives||2008||2009||2010||2011||2012||Total|
|Develop and have available to the research community means by which to merge or link databases that allow for tracking the involvement of people in ASD research by 2010.
IACC Recommended Budget: $1,300,000 over 2 years
|7.C. Funding: The recommended budget was met. Significantly more than the recommended minimum budget was allocated to projects specific to this objective.
Progress: IAN and Group Health Cooperative Autism Registry are two examples of projects that are responsive to this objective. This objective should be considered to be met, with funding exceeding the recommended budget and a large number of diverse projects addressing this issue. NDAR, IAN and AGRE are all publicly available databases.
Remaining Gaps, Needs and Opportunities: To advance this objective we need to encourage patients and families to join the registry. Compared to registry numbers for cystic fibrosis (100%), autism is behind at ~4% of patients enrolled in a registry. A table of the numbers of registrants by year would be an informative figure. We need more organized systems to improve participation.