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Presented by: Don Green greend@imseb

Web Portal for Virtual Pooled Registry Cancer Linkage System (VPR-CLS ) NAACCR 2019 Conference June 12, 2019. Presented by: Don Green greend@imseb.com. Acknowledgements. Funded by the National Cancer Institute (NCI)

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Presented by: Don Green greend@imseb

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  1. Web Portal for Virtual Pooled RegistryCancer Linkage System (VPR-CLS)NAACCR 2019 ConferenceJune 12, 2019 Presented by: Don Green greend@imseb.com

  2. Acknowledgements • Funded by the National Cancer Institute (NCI) • Coordinated by the North American Association of Central Cancer Registries (NAACCR) • Developed by Information Management Services, Inc. (IMS)

  3. Overview • Website Functionality • Linkage Request Workflow and Website Demo • Status of the VPR-CLS development

  4. Website Functionality • Tracking of Each Request • Automated Notifications • Security and Privacy • Exchange of Files

  5. Tracking of Each Request • Every step in workflow is monitored and displayed via the website • Registries involved in a particular request and associated status • Examples of information that are tracked for each request: • When initial application for VPR linkage is approved/denied • When a requestor’s study file is posted for registries to download • Which registries have performed the linkage with the study file and the resultant linkage counts • Type of application required to request individual-level data and status of the request • Requestor and registry liaison update system information at certain points in the workflow

  6. Automated Notifications • E-mail notifications sent when action taken for any request or if an action has not been taken in a timely manner • Examples of requestor notifications: • When the status of a request has changed • When linkage match counts have been submitted by a registry • Reminders for reporting of publications or study renewal • Examples of registry notifications: • When a new study has been approved for VPR linkage • When the study file for an approved study is ready for registry linkage • When a Requestor submits Templated Application (TIRA) to receive data on matched cases • When anticipated IRB/Registry review date has passed and no approval status is known

  7. Security and Privacy • An account will be needed in order to apply for a request • All file transactions will be secure • Requestors and Registries will only be able to view, update and exchange files related to requests they are involved with • Release of registry record-level data will go directly from the registry to the requestor and not through the VPR-CLS

  8. Exchange of Files • Standardized requestor study file • Match*Pro configuration files • Registry match count reports • Templated IRB/Registry application and supporting documents (e.g. study protocol, consent form, institutional IRB approval, etc.) • Registry/IRB approval and signed DUA

  9. Linkage Request Workflow and Website Demo • Website Structure and Content • Linkage Request Workflow • Phase I Workflow • Phase II Workflow • Registry Dashboard Reports

  10. VPR-CLS Home Page Resources • About Virtual Pooled Registry • VPR Fact Sheets • Preparing a Study Data File • Provided Software • General FAQ’s • Participating Registries

  11. Linkage Request Workflow Phase I Phase II

  12. Phase I Workflow Notifications Requestor is notified that request was received. NAACCR notified to review request.

  13. Phase I Workflow Notifications • If NAACCR approves: • Committee members are notified that they can vote. • If approved by the committee: • IMS notified to review request and sign IMS DUA. • All registries involved in the request are notified. • The Requestor is notified of approval and asked to upload their study data file.

  14. Phase I Workflow Notifications IMS notified that file has been uploaded.

  15. Phase I Workflow Notifications Registries notified to download the files, perform the linkage, and upload the Match Counts. NAACCR is notified that the registries can now upload the Match Counts.

  16. Phase I Workflow Notifications Registries reminded when they are overdue uploading their match counts – given 2.5 weeks. Requestor is notified when 80% of the registries have uploaded their match counts. Requestor notified when all registries have uploaded their counts.

  17. Phase II Workflow Notifications All registries selected are notified once the Requestor checks out.

  18. Phase II Workflow Notifications Registries are notified that the TIRA has been submitted. NAACCR notified.

  19. Phase II Workflow Notifications Each registry involved is notified when the Requestor indicates they have completed the forms.

  20. Phase II Workflow Notifications Requestor is notified when registry responds. Requestor is notified when they need to provide more information or resend a form. Registries notified if they are tardy.

  21. Phase II Workflow Notifications Requestor notified of pending dates. Requestor notified of late dates.

  22. Phase II Workflow Notifications Requestor notified when to remove data. Registries notified of data destruction.

  23. Registry Dashboard Reports • Upcoming/Pending Requests • Phase I – Match at Registry • Phase II – Registry/IRB Review • Completed Requests • Report by Due Date and Action Required

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