Last Reviewed: Dec. 6, 2021

Maine Cancer Registry

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Registry Data

Population Data

1,332,752Total Population Count
0.4%% of US Population
0.1%% of US Black Population
0.1%% of US API Population
0.2%% of US AI/AN* Population
0.0%% of US Hispanic Population
0.0%% of US Hispanic Non-White Population

*CHSDA Counties only

Cancer Data

8,997Malignant Cases
0.5%% of US Malignant Cases

Registry type

NPCR

Year registry became population-based

1995

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

1995

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 (Restrictions - https://www.naaccr.org/national-interstate-data-exchange-agreement/#30)

Study Participation

Research Type	Experience with Studies	Interested in Studies
Case Contacts Studies	No	No
Geospatial Studies	No	Yes
Linkage Studies	Yes	No
Rapid Case Ascertainment Studies	Yes	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

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

No forms, just specific documents or information

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

University of Southern Maine

IRB Federalwide Assurance Number

00001748

IRB forms available online

IRB homepage URL

https://usm.maine.edu/orio/institutional-review-board-irb

Method to submit IRB forms

IRB meeting frequency

Monthly

Registry Review Requirements

Registry Data Request Form URL(s)

URL	Description
https://www.maine.gov/dhhs/mecdc/public-health-systems/data-research/vital-records/mcr/requests/index.htm	Data request form

Method to submit Registry data request

Registry review meeting frequency

Monthly

Registry Data Release Policy/Procedure URL(s)

URL	Description
https://www.maine.gov/dhhs/mecdc/public-health-systems/data-research/vital-records/mcr/requests/documents/resch-req-applic20201214.pdf	Application for Restricted Data

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

No URLs specified.

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

Yes

Data Use and Renewal Requirements

When must study investigators destroy registry data

At end of study

Is notification of data destruction required

Yes

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

E-mail notification of destruction of data.

Publication review requirements

N/A

Data use agreement renewal requirements

3 years

IRB progress report requirements

None

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

30 days

Participates in VPR

Yes

Consent Requirements

Physician consent is required before patient contact

Depends on Study

Physician consent is obtained by

Depends on Study

Patient consent is obtained by

Researcher

Pediatric research special requirements

Registry fees

Registry fees are charged to obtain data

Yes

Registry data fee exceptions

TBD

Registry data payment is due

Before researcher receives data

Registry fee structure summary

These fees are to be determined in the future.

Registry fee structure URL

IRB fees

IRB review fees required

Maine CaRI Database Information