Last Reviewed: Jan. 29, 2020

Massachusetts Cancer Registry

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Registry Data

Population Data

6,824,571Total Population Count
2.1%% of US Population
1.4%% of US Black Population
2.4%% of US API Population
0.7%% of US AI/AN* Population
1.4%% of US Hispanic Population
2.6%% of US Hispanic Non-White Population

*CHSDA Counties only

Cancer Data

38,025Malignant Cases
2.2%% of US Malignant Cases

Registry type

NPCR

Year registry became population-based

1982

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

1995

Data linked with medicare

Yes

Years included in CINA Deluxe

1997-2015

CINA survial years

Participates in the National Interstate Data Exchange Agreement program

Yes (Restrictions - https://www.naaccr.org/national-interstate-data-exchange-agreement/#2)

Study Participation

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

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

IRB

Local/State IRB Review Requirements

IRB of record

Massachusetts Department of Public Health

IRB Federalwide Assurance Number

00000786

IRB forms available online

Yes

IRB homepage URL

http://IRBNet.org

Method to submit IRB forms

Online submission

Online IRB submission URL

http://IRBNet.org

IRB meeting frequency

Monthly

Process

Processing timeframe for linkage studies and de-identified data release

1 - 3 months

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

Annual justification to retain data is required; 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

Data destruction section must be filled out in the Closure Form which is found in www.IRBNet.org in the Forms and Templates section.

Publication review requirements

60 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

30 days

Participates in VPR

Yes

Consent Requirements

Physician consent is required before patient contact

Patient consent is obtained by

Registry

Pediatric research special requirements

Yes

Describe pediatric research considerations

Children are considered vulnerable population and appropriate supplemental appendix should be submitted.

Registry fees

Registry fees are charged to obtain data

IRB fees

IRB review fees required

Massachusetts CaRI Database Information