Completed project: The Informatics Core for the Collaborative Initiative on Fetal Alcohol Spectrum Disorders (EP Action Items 4, 16, 71)

Primary UITS contact: William Barnett (PI)

Completed: July 14, 2016

Description: The Collaborative Initiative on Fetal Alcohol Spectrum Disorders (CIFASD) is an international group of researchers working together to find diagnoses, preventions, and treatments for a range of disorders related to prenatal alcohol consumption. This international collaboration is necessary to bring together the number of patients needed to understand the distinctions in different disorders and how those different disorders affect different demographics. This collaboration also brings together experts who are setting standards for the field, and innovative technologies and approaches so that they can be more widely evaluated and deployed.

The role of the Informatics Core is to facilitate data sharing through the creation of standards for data integration and the development and deployment of software tools for data entry, data centralization, and data analysis.

For more, see the CIFASD home page.

Outcome: The Informatics Core has led the creation of a series of data standards and developed the software required to effectively collect and share such data. This includes the creation of the CIFASD Central Repository, a web-based database designed to help fulfill the NIH Roadmap goal of "wide access to technologies, databases, and other scientific resources that are more sensitive, more robust, and more easily adaptable to researchers' individual needs".

Milestones and status:

  • The project is funded through the following grants:
    • NIH/NIAAA 1 U24 AA014818-01; September 30, 2003-August 31, 2007
    • NIH/NIAAA 2 U24 AA014818-04; September 30, 2007-July 31, 2012
    • NIH/NIAAA 2 U24 AA014818-09; August 10, 2012-May 31, 2017
  • The Informatics Core has developed a central repository that contains data developed by CIFASD clinical research projects. It has developed a data dictionary that provides common terms for research across studies, and it has provided input, upload, download, and cross-query tools to assist researchers in analyzing CIFASD data.
  • The Informatics Core has produced two papers:
    • Arenson A.D., Bakhireva L., Chambers T., Deximo C., Foroud T., Jacobson J., Jacobson S., Jones K.L., Mattson S., May P., Moore E., Ogle K., Riley E., Robinson L., Rogers J., Streissguth A., Tavares M., Urbanski J., Yezerets H., Stewart C.A. Implementation of a Distributed Architecture for Managing Collection and Dissemination of Data for Fetal Alcohol Spectrum Disorders Research. GCCB 2006, LNBI 4360. pp 33-44. March, 2007.
    • Arenson A.D., Bakhireva L., Chambers C.D., Deximo C., Foroud T., Jacobson J.L., Jacobson S.W., Jones K.L., Mattson S.N., May P.A., Moore E., Ogle K., Riley E.P., Robinson L.K., Rogers J., Streissguth A.P, Tavares M., Urbanski J., Yezerets Y., Surya, R., Stewart C.A, Barnett, W.K. Implementation of a Shared Data Repository and Common Data Dictionary for Fetal Alcohol Spectrum Disorders Research. Alcohol, November 2010 (Vol. 44, Issue 7, pp 643-647, DOI: 10.1016/j.alcohol.2009.08.007).
  • August 2011: IU was asked to submit a pre-proposal in response for a U24 RFA from NIAAA to fund another five years of CIFASD activity as the Informatics Core.
  • December 14, 2011: Application as Informatics Core submitted in response to RFA-AA-07-004
  • January 1, 2012: 2,967 Dysmorphology Exams in Central Repository
  • March 1, 2012: Began developing uptake tools for CIFASD Phase III
  • July 30, 2012: Developed online listing of CIFASD Informatics Core resources for CIFASD.org
  • August 10, 2012: Informatics Core re-funded for another five years
  • October 3, 2012: Informatics Core delivered Neuro Phase III input tool for review
  • January 7-9, 2013: Annual CIFASD Face-to-Face meeting in Bethesda, Maryland; Barnett, G. Shankar, and Tavares attended. Barnett and Tavares presented on the status of the Informatics Core.
  • Bill Barnett asked to chair the CIFASD Data Access Committee (DAC)
  • CIFASD has entered into a partnership with NOFAS, a patient advocacy group, to promote public understanding of fetal alcohol spectrum disorders.
  • May 2013: Informatics Core Annual IRB review approved
  • September 2013: Number of patients in Central Repository exceeds 3,000
  • April 6-8, 2014: CIFASD Annual Meeting, Bethesda, MD
  • October 2014: CIFASD Data Use Policy approved by CIFASD
  • December 31, 2014: Michel Tavares leaves IU
  • March 10, 2015: Helen Yezerets brought on as full-time 3IT for CIFASD technical support
  • March 19-20, 2015: Annual CIFASD Face-to-Face meeting; Barnett presented on the status of the Informatics Core.
  • June 1, 2015: Number of Subjects in Central Repository exceeds 4,000
  • July 1, 2015: Bill Barnett took role of CRIO of Indiana CTSI and Regenstrief Institute, and this project moved with him into his portfolio. UITS Research Technologies continues to provide infrastructure support.
  • August 1, 2015: Implemented multiple dataset query to facilitate data extraction from all available datasets. Streamlined additional search attributes and provided filtering and sorting capabilities.
  • October 1, 2015: Designed secure granular data access to Phase I dataset for researchers outside of the CIFASD consortium
  • December 1, 2015: Completed creation of central repository for Screener and Ultrasound datasets that resulted in an increase of subject numbers in central repository exceeding 22,000

Upcoming events and presentations:

  • Annual CIFASD Meeting

Comment process: Contact the Informatics Core PI, William Barnett.

Benefits:

The CIFASD Informatics Core provides the data aggregation and integration needed for individual CIFASD research projects to undertake research across projects to determine the relationship among "face, brain, and behavior" and thereby improve diagnosis across multiple populations. CIFASD also aspires to investigate therapies that can mitigate the negative effects of maternal alcohol consumption either in utero or after birth, in order to improve the quality of life of children thus affected.

Client impact: The following Indiana University researchers are directly or indirectly supported by this project:

  • Shiaofen Fang, Department of Computer Science, IUPUI
  • Tatiana Foroud, Department of Medical and Molecular Genetics, IU School of Medicine
  • Charles Goodlett, Department of Psychology, IUPUI
  • Jeffrey Huang, Department of Computer Science, IUPUI
  • Elizabeth Moore, Department of Anthropology, IUPUI
  • Richard Ward, Department of Anthropology, IUPUI
  • Feng Zhou, Department of Anatomy and Cell Biology, IU School of Medicine

The following partner sites are served by the Informatics Core:

  • Duke University
  • Emory University
  • Harvard Medical School
  • Massachusetts General Hospital
  • Moscow Regional Institute of Obstetrics and Gynecology
  • Rivne Regional Diagnostic Center/Omni Center
  • Russian Academy of Science
  • Russian Federation National Research Center on Addictions
  • San Diego State University
  • Stanford University
  • State University of New York at Buffalo
  • Texas A&M University
  • University of California, Davis
  • University of California, Los Angeles
  • University of California, San Diego
  • University of Cape Town
  • University of Nebraska
  • University of New Mexico
  • University of North Carolina at Chapel Hill
  • University of South Alabama
  • VA Boston Healthcare System

Aids achievement of the following Empowering People Actions:

  • Recommendation A1
    • Action 4: Cyberinfrastructure. IU should continue to advance its local cyberinfrastructure, participation in national cyberinfrastructure, and its efforts to win federal funding of cyberinfrastructure programs that enhance IU's research capabilities.
      • This program represents a 10-year, and now possibly 15-year, substantial ongoing international research program for which IU provides essential cyberinfrastructure.
  • Recommendation A4
    • Action 16: External funding. OVPIT should continue to lead and expand its efforts to effectively partner with academic units, campuses, administrative units, or individual investigators for external funding opportunities.
      • This program has provided, to date, $1.3 million in funding to UITS.
  • Recommendation C15
    • Action 71: IT-enabled research resources. IU should identify a base of resources to provide both initial and sustained investments in selected areas for IT-enabled research, scholarship, and/or creative activity. This may include reallocating current resources and developing new ones, including endowments, grants, and/or additional fees.
      • This program leverages our database resources through our Oracle RDC database system and programming expertise from the Advanced Biomedical Information Technology Core (ABITC).

Project team:

  • William Barnett, Director, Science Community Tools (PI)
  • Yelena Yezerets
  • Andy Arenson
  • Ganesh Shankar

Additional information:

  • William Barnett is the PI of the grant and has management and financial responsibility for the project.
  • Dr. Ed Riley, San Diego State University, leads the CIFASD Consortium as the PI of the Administrative Core. A Science Advisory Board provides governance and advice to Dr. Riley and the individual CIFASD awards.
  • Funding agency and grants:
    • NIH/NIAAA 1 U24 AA014818-01; September 30, 2003-August 31, 2007
    • NIH/NIAAA 2 U24 AA014818-04; September 30, 2007-July 31, 2012
    • NIH/NIAAA 2 U24 AA014818-09: August 10, 2012-May 31, 2017
  • Funding to UITS: $1,998,565
  • Total funding to IU related to this project: $2,124,316

This is document avoc in the Knowledge Base.
Last modified on 2016-07-14 17:38:11.

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