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Newfoundland and Labrador Provincial Cancer Care Program

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Registry Data

Registry type

Canadian

Year registry became population-based

1969

First year high quality, population-based data available for research

2006

Data linked with medicare

Years included in CINA Deluxe

2005-2015

CINA survial years

2008-2014

Participates in the National Interstate Data Exchange Agreement program

Yes

Study Participation

Research Type	Experience with Studies	Interested in Studies
Case Contacts Studies	No	No
Geospatial Studies	No	No
Linkage Studies	No	No
Rapid Case Ascertainment Studies	No	No
Re-Abstracting/Patterns of Care Studies	No	No
Survival Studies	No	No

Contact Information

Required Review(s) and Initial Contact

Type of review required

Registry review only

Initial cancer registry contact/discussion required prior to submitting (or completing) application

Yes

Data request submission first step

Cancer Registry

Registry Review Requirements

Registry Data Request Form URL(s)

No URLs specified.

Method to submit Registry data request

Registry review meeting frequency

As needed

Registry Data Release Policy/Procedure URL(s)

No URLs specified.

Registry Data Use (or Research) Agreement URL(s)

No URLs specified.

Process

Processing timeframe for linkage studies and de-identified data release

1 - 3 months

Processing timeframe for patient contact studies

1 - 3 months

Human Subjects Protection Training Requirements

Collaboration with local researcher required

Yes

Initial required documentation

Step-by-Step data request submission process

Other requirements and helpful information for researchers

Procedures are likely to be revised within the next year

Data Use and Renewal Requirements

When must study investigators destroy registry data

As noted in approved documents (e.g. IRB/Registry Application, DUA, Confidentiality Agreement)

Is notification of data destruction required

Publication review requirements

N/A

Data use agreement renewal requirements

Annual

IRB progress report requirements

None

How far in advance of IRB expiration must IRB renewal be submitted

N/A

Participates in VPR

Consent Requirements

Physician consent is required before patient contact

N/A - No patient contact studies

Pediatric research special requirements

Registry fees

Registry fees are charged to obtain data

Yes

Registry data fee exceptions

Requests received fro Cancer Centre physicians

Registry data payment is due

After researcher receives data

Registry fee structure summary

Fees are determined by the number of hours required to pull the data and the resources required.

Registry fee structure URL

IRB fees

IRB review fees required

Newfoundland and Labrador CaRI Database Information

Newfoundland and Labrador Provincial Cancer Care Program

Registry Data

Study Participation

Contact Information

Required Review(s) and Initial Contact

Registry Review Requirements

Process

Data Use and Renewal Requirements

Consent Requirements

Registry fees

IRB fees