Cancer Linkage System VPRCLS NAACCR 2019 Conference June 12 2019 Presented by Don Green greendimsebcom Acknowledgements Funded by the National Cancer Institute NCI Coordinated by the North American Association of Central Cancer Registries NAACCR ID: 807271
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Web Portal for Virtual Pooled RegistryCancer Linkage System (VPR-CLS)NAACCR 2019 ConferenceJune 12, 2019
Presented by: Don Green greend@imseb.com
Slide2AcknowledgementsFunded by the National Cancer Institute (NCI)Coordinated by the North American Association of Central Cancer Registries (NAACCR)Developed by Information Management Services, Inc. (IMS)
Slide3OverviewWebsite Functionality Linkage Request Workflow and Website DemoStatus of the VPR-CLS development
Slide4Website FunctionalityTracking of Each RequestAutomated NotificationsSecurity and PrivacyExchange of Files
Slide5Tracking of Each RequestEvery step in workflow is monitored and displayed via the website
Registries involved in a particular request and associated statusExamples of information that are tracked for each request:When initial application for VPR linkage is
approved/deniedWhen a requestor’s study file is posted for registries to downloadWhich registries have performed the linkage with the
study file and the resultant linkage countsType of application required to request individual-level data and status of the requestRequestor
and
registry liaison update
system information at certain points in the workflow
Slide6Automated NotificationsE-mail notifications sent when action taken for any request or if an action has not been taken in a timely mannerExamples of requestor notifications:
When the status of a request has changedWhen linkage match counts have been submitted by a registryReminders for reporting of publications or study renewalExamples 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
Slide7Security and PrivacyAn account will be needed in order to apply for a requestAll file transactions will be secureRequestors 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
Slide8Exchange of FilesStandardized requestor study fileMatch*Pro configuration filesRegistry 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
Slide9Linkage Request Workflow and Website DemoWebsite Structure and ContentLinkage Request WorkflowPhase I WorkflowPhase II Workflow
Registry Dashboard Reports
Slide10VPR-CLS Home Page ResourcesAbout Virtual Pooled RegistryVPR Fact SheetsPreparing a Study Data FileProvided SoftwareGeneral FAQ’s
Participating Registries
Slide11Slide12Slide13Slide14Slide15Slide16Slide17Linkage Request Workflow
Phase I
Phase II
Slide18Requestor is notified that request was received.NAACCR notified to review request.
Phase I Workflow
Notifications
Slide19Slide20Slide21Slide22Slide23Phase I Workflow
Notifications
If NAACCR approves:
C
ommittee 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.
Slide24Phase I Workflow
IMS notified that file has been uploaded.
Notifications
Slide25Phase 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.
Slide26Phase I Workflow
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.
Notifications
Slide27Phase II Workflow
All registries selected are notified once the Requestor checks out.
Notifications
Slide28Slide29Slide30Slide31Slide32Slide33Slide34Phase II Workflow
Registries are notified that the TIRA has been submitted.
NAACCR notified.
Notifications
Slide35Slide36Slide37Phase II Workflow
Each registry involved is notified when the Requestor indicates they have completed the forms.
Notifications
Slide38Slide39Slide40Slide41Phase II Workflow
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.
Notifications
Slide42Slide43Slide44Slide45Slide46Phase II Workflow
Requestor notified of pending dates.
Requestor notified of late dates.
Notifications
Slide47Slide48Phase II Workflow
Requestor notified when to remove data.
Registries notified of data destruction.
Notifications
Slide49Slide50Registry Dashboard ReportsUpcoming/Pending RequestsPhase I – Match at RegistryPhase II – Registry/IRB ReviewCompleted Requests
Report by Due Date and Action Required
Slide51Slide52Slide53Development TimelinePhase I:Round two of pilot testing underwayPhase II:
Pilot testing this summerAnticipated to be completed by the end of 2019
Slide54Thank You