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Integrated Data Repository Survey

Integrated Data Repository Survey. Integrated Data Repository Defined. A database with the following characteristics: Utilizes a non-transactional structure optimized for research purposes rather than clinical care Contains clinical, administrative, trial, and -omics data

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Integrated Data Repository Survey

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  1. Integrated Data Repository Survey

  2. Integrated Data Repository Defined A database with the following characteristics: • Utilizes a non-transactional structure optimized for research purposes rather than clinical care • Contains clinical, administrative, trial, and -omics data • Incorporates common data standards across different databases • Includes a data quality component for continuous improvement based on feedback from end users • Includes a metadata repository function with information on data quality (e.g., rates of missing values) • Integrates with IRB systems for streamlined access to data for research purposes • Structured to provide statistical support so that high quality clinical and translational research can result from analysis

  3. Survey History • Among the First Data Repository Workgroup Deliverables • Data gathered/updated approximately once per CTSA co-hort entry • Second version

  4. Overview • Does your institution currently have an existing integrated data repository?

  5. Organization • Is it part of a shared multi-institutional repository (federated or centralized)?

  6. Duration of Existence • How many months has it been in existence?

  7. Content • What types of data (subject areas) and how many years for each type are currently included?

  8. Support Resources • How many FTE support the repository?

  9. Compliance • Is your IDR an IRB-approved research protocol/project?

  10. Compliance • Does your IDR contain data from a (HIPAA) covered entity DIFFERENT FROM your CTSA's home?

  11. Technical Tools • What DBMS is utilized to support your repository? • DB2 • Whole-text indexed database stored in binary format linked by patient identifier • oracle, sql server, sas • www.s3db.org, for an example see report at http://www.ncbi.nlm.nih.gov/pubmed/18698353 • Currently Oracle but migrating to Netezza

  12. Technical Tools • What front-facing Business Intelligence tools are used to support your repository (select all that apply)?

  13. Electronic Medical Records • What system does your institution use for an Inpatient EMR? (Please provide vendor, product and version)?

  14. Electronic Medical Records • What system does your institution use for an Outpatient EMR? (Please provide vendor, product and version)?

  15. Laboratory Systems • What system does your institution use for Labs? (Please provide vendor, product and version)?

  16. Departmental Systems • What system does your institution use for Radiology? (Please provide vendor, product and version)?

  17. Departmental Systems • What system does your institution use for Pharmacy? (Please provide vendor, product and version)?

  18. Departmental Systems • What system does your institution use for your Emergency Department?

  19. Master Patient Index • Which group is currently responsible for maintaining your Enterprise Master Person Index (EMPI)?

  20. Master Patient Index • Is your EMPI active (must be used to identify patients before they are registered/admitted) or passive (a repository of linkages across similar patient records used as a reference tool)?

  21. Data Access Modalities • How do investigators access your IDR for de-identified aggregate data?

  22. Data Access Modalities • How do investigators access your IDR for de-identified patient-level data?

  23. Data Access Modalities • How do investigators access your IDR for fully-identified patient-level data?

  24. Free-Text Responses • What are/were the biggest obstacles to getting your IDR project approved? • What continue to be the biggest challenges for your IDR project? • Please share some of your most important lessons learned. • What would you do differently? • What are the top 5 planned enhancements or additions to the IDR?

  25. Future Directions • Suggestions for survey additions / improvements • See the IDR Survey page on the CTSA wiki for more information Please send any comments / suggestions to the IDR Listserv or to Rob Schuff (schuffr@ohsu.edu)

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