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Permanent Link: http://ufdc.ufl.edu/IR00002451/00001
 Material Information
Title: Integrated Data Repository
Physical Description: Presentation
Creator: Conlon, Michael
Publisher: University of Florida
Place of Publication: Gainesville, Florida
Publication Date: May 1, 2013
 Notes
Acquisition: Collected for University of Florida's Institutional Repository by the UFIR Self-Submittal tool. Submitted by Michael Conlon.
Publication Status: Published
 Record Information
Source Institution: University of Florida Institutional Repository
Holding Location: University of Florida
Rights Management: All rights reserved by the submitter.
System ID: IR00002451:00001


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Integrated Data Repository Mike Conlon, PhD Associate Director, UF CTSI The UF CTSI is supported in part by NIH awards UL1 TR000064, KL2 TR000065 and TL1 TR000066

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That contained clinical data from Epic for all patients in the health care system Combined that data with information participate in research Had information on labs, procedures, diagnoses, medications, biospecimens genetic markers Had information over care events The UF CTSI is supported in part by NIH awards UL1 TR000064, KL2 TR000065 and TL1 TR000066

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Quickly at our desks, interactive Professionally with full consideration of the complexity of clinical data, translating our ideas into the details necessary for a an accurate result Securely protecting patient privacy Accurately Across clinics and hospitals Data available for analysis via appropriate protocols, combined with additional research data The UF CTSI is supported in part by NIH awards UL1 TR000064, KL2 TR000065 and TL1 TR000066

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The 2008 Plan Data integration lowers the barriers to using and more importantly, reusing data. By anticipating researcher needs building and operating interfaces between source systems and access for clinicians and researchers, we serve all goals of the CTSI: 1) barriers to interaction are reduced by providing data in easily accessible, standardized formats; 2) training programs are enhanced by providing access to substantial data resources; 3) access to advanced technologies is facilitated by making data from these systems available for analysis; and 4) new opportunities are created for collaboration by making standardized data available to all members of the CTSI across the state. Data integration work consists of collaborating with data source system providers and computational resource providers to develop data pathways leading to reusable, standardized formats available through access systems such as the CTSI Portal. CRU and TTRP source systems often must be integrated to intermediate computational resources for processing (Fig. 3). Molecular data and imaging data often require significant computation whose results must then be transformed into standard formats for access. Data format standards exist and are emerging across research and health informatics (83). The UF CTSI is supported in part by NIH awards UL1 TR000064, KL2 TR000065 and TL1 TR000066 Once data are transformed they can then be organized for search and secured with access control standardized through IAM processes in an IDR. To integrate data in support of translational research we will adopt national standards for security, software and a data interc han ge (C.2.a), provide integration to emerging national repositories (C.2.b) and establish an enterprise architecture for informatics (C.2.c). The res ulting integration of TTRP (C.2.d) and CRU (C.2.e) resources will result in integrated research database delivery (C.2.f). Using standardized access me tho ds for data we will transform our practice of reusing data, thereby encouraging data reuse and sharing (C.2.g).

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Integrated Data Repository The UF CTSI is supported in part by NIH awards UL1 TR000064, KL2 TR000065 and TL1 TR000066

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I2B2 Cohort Discovery The UF CTSI is supported in part by NIH awards UL1 TR000064, KL2 TR000065 and TL1 TR000066 Patients 329,986 Visits 1,786,999 Procedures 9,957,757 Diagnoses 12,388,053 Adding 600K procedures per month IDR will double in size when Jacksonville is added in summer, 2013

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Virtual Desktop Interface (VDI) PHI from the IDR may be released to the investigator Under IRB approval With a Data Use Agreement Data released from the IDR will be provided in a secure environment a VDI that enable the investigator to analyze the data without having to move the data to insecure environments See http://vdi.ahc.ufl.edu to get started The UF CTSI is supported in part by NIH awards UL1 TR000064, KL2 TR000065 and TL1 TR000066

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IDR Timeline The UF CTSI is supported in part by NIH awards UL1 TR000064, KL2 TR000065 and TL1 TR000066

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IDR support and governance The IDR is jointly sponsored by Shands and the CTSI The support team includes data modelers, analysts, programmers, DBAs, ETL experts A steering committee meets regularly to set direction and monitor progress For more information, please contact the IDR project lead, Gigi Lipori (pflugg@shands.ufl.edu) The UF CTSI is supported in part by NIH awards UL1 TR000064, KL2 TR000065 and TL1 TR000066

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I2B2 Training and Sign on I2B2 training is available on line at the IDR web site: http://idr.ahc.ufl.edu/i2b2/i2b2 training module / Once training is complete (10 minutes), you can apply for sign on to i2b2 Once approved (next day), you can sign on to i2b2 at: http://i2b2.idr.ahc.ufl.edu The UF CTSI is supported in part by NIH awards UL1 TR000064, KL2 TR000065 and TL1 TR000066

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Professional Services P rofessional services are available if your queries are complex, or you are unfamiliar with Shands clinical data, its coding and its nuances Professional services for developing cohorts and creating datasets is available at cost ($$) Contact Dr. Felix Liu ( felix.liu@ufl.edu ) for an appointment regarding your IDR needs. The UF CTSI is supported in part by NIH awards UL1 TR000064, KL2 TR000065 and TL1 TR000066

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Consent2Share Initiated on 9/11/12 Consent form given with admissions packet Consent asks 2 questions Can we store your excess tissue with protected health information? Can we re contact you for a future study? Collected by admissions clerk, data entered into EPIC, consent form scanned with other documents answer questions Informed Consent Hotline to answer initial questions CTSI patient research advocate for more detailed queries The UF CTSI is supported in part by NIH awards UL1 TR000064, KL2 TR000065 and TL1 TR000066 Results to date (>10,000) 85 % 79 % recontact

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CTSI Biorepository Biospecimen collection, processing and storage. Stored biospecimens can be used by any researcher with IRB approved protocols. Prospective biospecimen collection to fulfill investigator needs for IRB approved protocols. Storage for biospecimens collected by investigators. Stored biospecimens belong solely to the investigator. Oversight of the release of biospecimens from the UF Department of Pathology for other IRB approved research protocols. Pathology services including those provided by the Molecular Pathology Core and confirmation of diagnosis by a board certified pathologist upon request. The UF CTSI is supported in part by NIH awards UL1 TR000064, KL2 TR000065 and TL1 TR000066 One of two Hamilton 80 C automated sample management systems (Robotic freezers ). The biorepository also has eight Forma Thermo Scientific 80 C Freezers with back up CO 2 and sensaphone alarm systems including back up storage space, centrifuge for basic bodily fluid processing, QiaCube for small volume RNA, DNA and protein purification, Agilent Bioanalyzer for RNA, DNA and protein quality control analysis, OnCore BioSpecimen Management

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Genetic Information from the UF & Shands Personalized Medicine Program Challenge: genetic polymorphism of CYP2C19 leads to reduced ability to activate clopidogrel (Plavix) and increased risk of cardiovascular complication The UF CTSI is supported in part by NIH awards UL1 TR000064, KL2 TR000065 and TL1 TR000066

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For More Information On the web: http://idr.ahc.ufl.edu The UF CTSI is supported in part by NIH awards UL1 TR000064, KL2 TR000065 and TL1 TR000066