Last Reviewed: Nov. 23, 2021

Manitoba Cancer Registry

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Registry Data

Registry type

Canadian

Year registry became population-based

1956

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

1984

Data linked with medicare

Years included in CINA Deluxe

1995-2015

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	Yes	No
Linkage Studies	Yes	No
Rapid Case Ascertainment Studies	No	No
Re-Abstracting/Patterns of Care Studies	Yes	No
Survival Studies	Yes	No

Contact Information

Required Review(s) and Initial Contact

Type of review required

Both local/state IRB review and Registry review

Multiple local IRBs are required (e.g. Institutional registry and state registry)?

Yes

Type of request forms required

Separate IRB and Registry forms

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

Yes

Data request submission first step

Cancer Registry

Local/State IRB Review Requirements

IRB of record

University of Manitoba Health Research Ethics Board

IRB Federalwide Assurance Number

IRB forms available online

Yes

IRB homepage URL

https://www.cancercare.mb.ca/Research/research-impact-commitee/guidelines

Method to submit IRB forms

IRB meeting frequency

Monthly

Registry Review Requirements

Registry Data Request Form URL(s)

URL	Description
https://www.cancercare.mb.ca/Research/research-impact-commitee/guidelines	CancerCare Manitoba research impact review committee

Method to submit Registry data request

Registry review meeting frequency

As needed

Registry Data Release Policy/Procedure URL(s)

URL	Description
https://www.cancercare.mb.ca/Research/research-impact-commitee/guidelines	Research Resource Impact Committee

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

URL	Description
https://www.cancercare.mb.ca/Research/research-impact-commitee/guidelines

Process

Processing timeframe for linkage studies and de-identified data release

3-6 months

Processing timeframe for patient contact studies

3-6 months

Human Subjects Protection Training Requirements

Yes

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

Yes

Describe what to include in the notification or provide the URL for a specific form

https://www.cancercare.mb.ca/Research/research-impact-commitee/guidelines

Publication review requirements

90 days in advance

Data use agreement renewal requirements

Annual

IRB progress report requirements

Annual

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

60 days

Participates in VPR

Consent Requirements

Physician consent is required before patient contact

Patient consent is obtained by

Registry

Pediatric research special requirements

Yes

Describe pediatric research considerations

Likely will require consent by parent.

Registry fees

Registry fees are charged to obtain data

Yes

Registry data fee exceptions

Registry data payment is due

Before researcher receives data

Registry fee structure summary

Fees for data extraction; also fees for IRB review for industry sponsored research.

Registry fee structure URL

https://www.cancercare.mb.ca/Research/research-impact-commitee/guidelines

IRB fees

IRB review fees required

Yes

Irb data fee exceptions

Non-industry projects are exempt.

IRB fee amounts

See https://www.cancercare.mb.ca/Research/research-impact-commitee/guidelines.

Manitoba CaRI Database Information

Manitoba Cancer Registry

Registry Data

Study Participation

Contact Information

Required Review(s) and Initial Contact

Local/State IRB Review Requirements

Registry Review Requirements

Process

Data Use and Renewal Requirements

Consent Requirements

Registry fees

IRB fees