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Interagency Autism Coordinating Committee (IACC)
Autism Research Database
Office of Autism Research Coordination (OARC)
 
Project Element Element Description

Project Title

Project Title

Interactive Autism Network Core and Simons Simplex Collection Registry

Principal Investigator

Principal Investigator

Lipkin, Paul

Description

Description

The mission of the Interactive Autism Network (IAN) is to accelerate autism spectrum disorder research in order to improve the lives of people living with this disorder. IAN has fulfilled an important need by offering valuable services (assistance with participant recruitment and data distribution) to the research community. The project involves the community in the research enterprise by providing clear, family-friendly, evidence-based information about autism and autism research. It contributes directly to knowledge about autism through peer-reviewed publications. It also supports important insurance reform and safety advocacy activities. As of 30 June 2014, IAN had 47,723 consenting research participants. This includes 18,778 individuals with autism and their unaffected family members. These individuals participated in a complex self-report protocol consisting of baseline questionnaires, standardized instruments and one-time surveys. The data that IAN collected, along with the generous involvement of the IAN families, has enabled nearly 500 autism research projects to recruit participants. In addition, IAN educates the public about the importance of research participation. These efforts increase public understanding, enhance research participation and create a feedback loop that provides information to research participants about the studies in which they have participated. Since its launch in 2007, the IAN Community has had more than 5 million visits, with readers from 170 countries totaling more than 20 million page views. IAN is working with the Simons Foundation to become an even more important resource for autism researchers and the autism community by improving its research protocol, its support for researchers and its educational outreach activities. The Simons Simplex Community at the Interactive Autism Network (SSC@IAN) enables researchers to collect data from the Simons Simplex Collection, a well-characterized cohort of families that include one individual with autism and unaffected parents and siblings. IAN is engaging the Simons Simplex families in a long-term research endeavor through the SSC@IAN. Researchers can also contact families for participation in follow-up and other studies.

Funder

Funder

Simons Foundation

Fiscal Year Funding

Fiscal Year Funding

702992

Current Award Period

Current Award Period

2013-2015

Strategic Plan Question

Strategic Plan Question

Question 7: What Other Infrastructure and Surveillance Needs Must Be Met?

Strategic Plan Objective

Strategic Plan Objective

Green dot: Objective has greater than or equal to the recommended funding. 7C. 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.

Project Link

Project Link

Interactive Autism Network Core and Simons Simplex Collection Registry (External web link)

Institution

Institution

HUGO W. MOSER RES INST KENNEDY KRIEGER

State/Country

State/Country

Maryland

Project Number

Project Number

302672

Federal or Private?

Federal or Private?

Private

Received ARRA Funding?

Received ARRA Funding?

No

History/Related Projects

History/Related Projects

Interactive Autism Network Core and Simons Simplex Collection Registry | 807640 | 2014 | 302672
Interactive Autism Network Core and Simons Simplex Collection Registry | 350000 | 2013 | 302672

 
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