1. Professor Department of Biomedical Informatics University of Pittsburgh School of Medicine crowleyrs@upmc.edu Rebecca Crowley Jacobson

2. http://ties.upmc.com Describe the TIES system and its functionality Show you the types of searches that can be performed Demonstrate the system Explain how to get institutional approval and access Explain the relationship to Honest Brokers, Tissue Bank Explain how to learn to use the system Explain how to submit an account request (A copy of the Preliminary User and Research Study Data account request forms are included in your handouts. During this session, the form can be filled out and turned in for processing and approval) Provide consultation for possible users on research projects

3. http://ties.upmc.com

4. Deployed UPMC-approved system for retrieving data and identifying and ordering tissue using surgical pathology clinical reports Provides access to 4 million de-identified pathology reports, across all UPMC hospitals, from 2003-present, updated monthly and automatically from clinical systems

5. http://ties.upmc.com Uses natural language processing and controlled vocabulary to encode and semi-structure reports before you search –What this means to you: Better accuracy of results, ability to look for specific criteria easily Create case sets to order tissue –What this means to you: Work more quickly with an honest broker to identify the materials you want to use Work with your honest broker –What this means to you: Enables you to include TIES with other data, and still remain de-identified, not human subjects research Deployed at University of Pittsburgh and other cancer centers and institutions across the country –What this means to you: In the future, you may be able to use the TIES system to collaborate on multi-center research projects across institutions

6. http://ties.upmc.com TIES was developed by faculty and staff at DBMI, with the support of the CTSI The HSTB administers all TIES policies, authorization and access to the system, handles tissue requests TIES is a way to access de-id data independent of the HSTB (except for approval) TIES is a way to streamline requests for paraffin embedded tissue, working with the HSTB

7. http://ties.upmc.com HSTB tissue service pricing is the same regardless of whether you use TIES or not For data only requests – researchers will not be charged if they use TIES http://www.tissuebank.pitt.edu/

8. http://ties.upmc.com Any Honest Broker within an IRB-approved Honest Broker System can become an HB in TIES That person will have access to all identifiers Specific training is available for TIES Honest Brokers

9. http://ties.upmc.com XXXXX or her designee will serve as an honest broker if the researcher prefers or does not currently have an HB An individual who is already an HB and would like to become a ‘TIES HB’ should contact XXXXX

10. http://ties.upmc.com Dr. Han is working on a new biomarker for Sarcoidosis. She is currently writing an NIH grant submission and needs to quickly determine how many retrospective samples could be included in her study, broken down by age, gender and site of disease, for inclusion in her preliminary results section. She requests a preliminary user account, creates the figures she needs and pastes them into her grant submission. Demonstration of TIES (preparatory to research)

11. http://ties.upmc.com Dr. Han’s grant is funded. She is interested in examining relevant cases for developing a sarcoidosis tissue microarray (TMA) in collaboration with a colleague in the Pathology Department. She submits an IRB protocol, and a new study request to the HSTB to upgrade her privileges on the system. Demonstration of TIES (research user and ordering)

12. http://ties.upmc.com Dr. Crohn is studying the development of cancer in patients with Ulcerative Colitis. He wants a cohort of patients with biopsy proven UC to examine changes in severity, anatomic involvement and progression to dysplasia and cancer. Demonstration of TIES (temporal searches)

13. http://ties.upmc.com Dr. Crohn also needs de-identified information on the outcomes of these patients, and would like to get this through the Cancer Registry. Demonstration of TIES (saving results as case sets) Discussion of Honest Brokers

14. http://ties.upmc.com User Manual View videos on TIES website Request training through the Help Desk Willingness to explore and experiment, learning to deal with concepts is different than ‘string’ searches

15. http://ties.upmc.com Get access to the system Request accounts User Manual and Videos Information on the status of the system How to get help if there is a problem with the system or your account

16. http://ties.upmc.com Collaborative – you can work together with others designated on a study Accessing the thick client for the first time takes a little time – subsequently it will be very fast Evaluation results are in recent issue of JAMIA We gratefully acknowledge funding from CTSI and NCI

17. http://ties.upmc.com Questions?