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

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
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

17. Linkage Request Workflow1
Requestor Submits a Request to Link 2
Request Reviewed by NAACCR and Voted on by Research Review Committee 3
Requestor Submits a Study File 4
IMS Study File Validation and Creation of Match*Pro Configuration File 5
Registry Performs a Linkage and Uploads the Match Counts 6
Requestor Reviews Matches and Selects Registries to Approach to Obtain Record-Level Data 7
Templated IRB Application Form (TIRA) is Submitted by the Requestor 8
Additional Required Registry/State forms are Submitted by the Requestor 9
Registry/State Approves the Request and Releases Record-Level Data 10
Renewal and Reporting 11
Data Destruction
Phase I
Phase II

18. Phase I Workflow Notifications1
Requestor Submits a Request to Link 2
Request Reviewed by NAACCR and Voted on by Research Review Committee 3
Requestor Submits a Study File 4
IMS Study File Validation and Creation of Match*Pro Configuration File 5
Registry Performs a Linkage and Uploads the Match Counts
Requestor is notified that request was received.
NAACCR notified to review request.

23. Phase I Workflow Notifications1
Requestor Submits a Request to Link 2
Request Reviewed by NAACCR and Voted on by Research Review Committee 3
Requestor Submits a Study File 4
IMS Study File Validation and Creation of Match*Pro Configuration File 5
Registry Performs a Linkage and Uploads the Match Counts
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.

24. Phase I Workflow Notifications1
Requestor Submits a Request to Link 2
Request Reviewed by NAACCR and Voted on by Research Review Committee 3
Requestor Submits a Study File 4
IMS Study File Validation and Creation of Match*Pro Configuration File 5
Registry Performs a Linkage and Uploads the Match Counts
IMS notified that file has been uploaded.

25. Phase I Workflow Notifications1
Requestor Submits a Request to Link 2
Request Reviewed by NAACCR and Voted on by Research Review Committee 3
Requestor Submits a Study File 4
IMS Study File Validation and Creation of Match*Pro Configuration File 5
Registry Performs a Linkage and Uploads the Match Counts
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.

26. Phase I Workflow Notifications1
Requestor Submits a Request to Link 2
Request Reviewed by NAACCR and Voted on by Research Review Committee 3
Requestor Submits a Study File 4
IMS Study File Validation and Creation of Match*Pro Configuration File 5
Registry Performs a Linkage and Uploads the Match Counts
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.

27. Phase II Workflow Notifications1
Requestor Reviews Matches and Selects Registries to Approach to Obtain Record-Level Data 2
Templated IRB Application Form (TIRA) is Submitted by the Requestor 3
Additional Required Registry/State forms are Submitted by the Requestor 4
Registry/State Approves the Request and Releases Record-Level Data 5
Renewal and Reporting 6
Data Destruction
All registries selected are notified once the Requestor checks out.

34. Phase II Workflow Notifications1
Requestor Reviews Matches and Selects Registries to Approach to Obtain Record-Level Data 2
Templated IRB Application Form (TIRA) is Submitted by the Requestor 3
Additional Required Registry/State forms are Submitted by the Requestor 4
Registry/State Approves the Request and Releases Record-Level Data 5
Renewal and Reporting 6
Data Destruction
Registries are notified that the TIRA has been submitted.
NAACCR notified.

37. Phase II Workflow Notifications1
Requestor Reviews Matches and Selects Registries to Approach to Obtain Record-Level Data 2
Templated IRB Application Form (TIRA) is Submitted by the Requestor 3
Additional Required Registry/State forms are Submitted by the Requestor 4
Registry/State Approves the Request and Releases Record-Level Data 5
Renewal and Reporting 6
Data Destruction
Each registry involved is notified when the Requestor indicates they have completed the forms.

41. Phase II Workflow Notifications1
Requestor Reviews Matches and Selects Registries to Approach to Obtain Record-Level Data 2
Templated IRB Application Form (TIRA) is Submitted by the Requestor 3
Additional Required Registry/State forms are Submitted by the Requestor 4
Registry/State Approves the Request and Releases Record-Level Data 5
Renewal and Reporting 6
Data Destruction
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.

46. Phase II Workflow Notifications1
Requestor Reviews Matches and Selects Registries to Approach to Obtain Record-Level Data 2
Templated IRB Application Form (TIRA) is Submitted by the Requestor 3
Additional Required Registry/State forms are Submitted by the Requestor 4
Registry/State Approves the Request and Releases Record-Level Data 5
Renewal and Reporting 6
Data Destruction
Requestor notified of pending dates.
Requestor notified of late dates.

48. Phase II Workflow Notifications1
Requestor Reviews Matches and Selects Registries to Approach to Obtain Record-Level Data 2
Templated IRB Application Form (TIRA) is Submitted by the Requestor 3
Additional Required Registry/State forms are Submitted by the Requestor 4
Registry/State Approves the Request and Releases Record-Level Data 5
Renewal and Reporting 6
Data Destruction
Requestor notified when to remove data.
Registries notified of data destruction.

50. 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

53. Development Timeline Phase I: Phase II:
Round two of pilot testing underway
Phase II:
Pilot testing this summer
Anticipated to be completed by the end of 2019

54. Thank You