Last Reviewed: Nov. 28, 2022

Prince Edward Island Cancer Registry

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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

1992

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

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)?

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

PEI Research Ethics Board

IRB Federalwide Assurance Number

N/A

IRB forms available online

Yes

IRB homepage URL

https://www.princeedwardisland.ca/en/information/health-pei/pei-research-ethics-board

Method to submit IRB forms

IRB meeting frequency

Monthly

Registry Review Requirements

Registry Data Request Form URL(s)

URL	Description
https://www.princeedwardisland.ca/en/information/health-pei/pei-cancer-treatment-centre	contact by email to request form

Method to submit Registry data request

Registry review meeting frequency

As needed

Registry Data Release Policy/Procedure URL(s)

URL	Description
https://www.princeedwardisland.ca/en/information/health-pei/pei-cancer-treatment-centre	Contact with registry required to obtain.

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

URL	Description
https://www.princeedwardisland.ca/en/information/health-pei/pei-cancer-treatment-centre	Contact with registry required to obtain.

Process

Processing timeframe for linkage studies and de-identified data release

Greater than 6 months

Processing timeframe for patient contact studies

Greater than 6 months

Human Subjects Protection Training Requirements

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

Publication review requirements

60 days in advance

Data use agreement renewal requirements

None

IRB progress report requirements

Annual

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

30 days

Participates in VPR

Consent Requirements

Physician consent is required before patient contact

Patient consent is obtained by

Depends on Study

Pediatric research special requirements

Registry fees

Registry fees are charged to obtain data

Yes

Registry data fee exceptions

Registry data payment is due

After researcher receives data

Registry fee structure summary

Compensation for employee time

Registry fee structure URL

IRB fees

IRB review fees required

Prince Edward Island CaRI Database Information