Friday, May 21, 2010
Franklin Hall B Level 4 (Philadelphia Marriott Downtown)
9:00 AM
Background: The Autism Spectrum Disorder (ASD) research enterprise is characterized by the significant heterogeneity of the disorder, small research sample sizes, and a strong sense of urgency. The National Database for Autism Research (NDAR) is designed and implemented to facilitate progress in this particular environment. Beyond providing investigators with significant technical capabilities for their data, NDAR has developed strategies to assure protection of research subjects, ensure data quality, and harmonize compatibility across other ASD research data sources.
Objectives: Funded by the National Institutes of Health (NIH), NDAR is a bioinformatics platform with objectives to: 1) facilitate data sharing and scientific collaboration, 2) provide bioinformatics solutions to address community-wide needs and 3) enable the effective communication of detailed research data, tools and information.
Methods:NDAR is a collaborative effort with the ASD research community resulting from engagement with privately and publically funded researchers through special interest groups, workshops, and other meetings. NDAR’s Global Unique Identifier (GUID) protects the identity of a research subject while allowing for the collection and analysis of data across time and projects. NDAR’s Data Dictionary Tool currently defines 15,000+ data variables for clinical assessments, imaging, and genomics; allows researchers to define their own data structures; and works with the NDAR Validation Tool to ensure the quality and standardization of data. NDAR’s policies and procedures ensure that data are shared at appropriate times without compromising research, allow NDAR to be used as a private collaborative space, and control the submission and access of research data. NDAR’s federation capability allows for the deep linking into other ASD and ASD relevant data sources, providing direct access to data while allowing the data to reside under the control of the originating organization.
Results: NDAR receives data from the NIH Autism Centers of Excellence (ACE) grantees and will soon receive data from 43 autism research grants funded under the American Recovery and Reinvestment Act (ARRA). The submission of both descriptive and experimental data from the combined targeted enrollment for these projects will result in data from tens of thousands of subjects. And, all investigators conducting human ASD research, regardless of funding source, are strongly encouraged to share data via NDAR. NDAR is now deeply linking with major public and private informatics platforms relevant to ASD research. The Interagency Autism Coordinating Committee has recognized the value of NDAR by adding NDAR to specific objectives in its 2010 Strategic Plan.
Conclusions: NDAR not only continues to develop its capabilities, but is also working closely with other major public and private informatics efforts to form a rich global network of data and tools. This network will add value to ASD research beyond the sum of the contributions of the individual platforms, giving researchers access to more data than any one researcher could collect, and giving access to a broad range of robust analytic tools. This network will give autism research a bigger – and better – bang for the buck, and will accelerate progress in this pressing area of public health.
Objectives: Funded by the National Institutes of Health (NIH), NDAR is a bioinformatics platform with objectives to: 1) facilitate data sharing and scientific collaboration, 2) provide bioinformatics solutions to address community-wide needs and 3) enable the effective communication of detailed research data, tools and information.
Methods:
Results: NDAR receives data from the NIH Autism Centers of Excellence (ACE) grantees and will soon receive data from 43 autism research grants funded under the American Recovery and Reinvestment Act (ARRA). The submission of both descriptive and experimental data from the combined targeted enrollment for these projects will result in data from tens of thousands of subjects. And, all investigators conducting human ASD research, regardless of funding source, are strongly encouraged to share data via NDAR. NDAR is now deeply linking with major public and private informatics platforms relevant to ASD research. The Interagency Autism Coordinating Committee has recognized the value of NDAR by adding NDAR to specific objectives in its 2010 Strategic Plan.
Conclusions: NDAR not only continues to develop its capabilities, but is also working closely with other major public and private informatics efforts to form a rich global network of data and tools. This network will add value to ASD research beyond the sum of the contributions of the individual platforms, giving researchers access to more data than any one researcher could collect, and giving access to a broad range of robust analytic tools. This network will give autism research a bigger – and better – bang for the buck, and will accelerate progress in this pressing area of public health.