Last Reviewed:

Ontario Cancer Registry

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Registry Data

Registry type

Canadian

Year registry became population-based

1964

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

2010

Data linked with medicare

Years included in CINA Deluxe

1995-2014

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

Contact Information

Required Review(s) and Initial Contact

Type of review required

Local/state IRB review only

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

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

Data request submission first step

Cancer Registry

Local/State IRB Review Requirements

IRB of record

https://www.ccohealth.ca/en/request-data-for-research

IRB Federalwide Assurance Number

N/A

IRB forms available online

IRB homepage URL

https://www.ccohealth.ca/en/request-data-for-research

Method to submit IRB forms

IRB meeting frequency

Bi-weekly

Process

Processing timeframe for linkage studies and de-identified data release

N/A

Processing timeframe for patient contact studies

3-6 months

Human Subjects Protection Training Requirements

Yes

Collaboration with local researcher required

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

This varies by study requirements and Ontario law.

Publication review requirements

90 days in advance

Data use agreement renewal requirements

Data can be used for the stated lengh of the study, then extensions may be granted. New use of the same data requires either an amendment to the agreement or a new agreement

IRB progress report requirements

None

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

Depends on Study

Physician consent is obtained by

Registry

Patient consent is obtained by

Registry

Pediatric research special requirements

Registry fees

Registry fees are charged to obtain data

Yes

Registry data fee exceptions

No exceptions

Registry data payment is due

Before researcher receives data

Registry fee structure summary

An administrative fee of $2100, as well as an hourly analytical fee of $75 per hour, will be applied to all research data requests.

The administrative fee is invoiced once approval has been granted. Payment is required before data extraction can begin.

A second invoice for the analytical hours will be sent with the final data disclosure. Data will not be disclosed until the administrative fee is paid.

Registry fee structure URL

https://www.ccohealth.ca/en/request-data-for-research

IRB fees

IRB review fees required

Ontario CaRI Database Information

Ontario Cancer Registry

Registry Data

Study Participation

Contact Information

Required Review(s) and Initial Contact

Local/State IRB Review Requirements

Process

Data Use and Renewal Requirements

Consent Requirements

Registry fees

IRB fees