Last Reviewed: Nov. 21, 2023

Rhode Island Cancer Registry

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Registry Data

Population Data

1,056,546Total Population Count
0.3%% of US Population
0.2%% of US Black Population
0.2%% of US API Population
0.1%% of US AI/AN* Population
0.3%% of US Hispanic Population
0.6%% of US Hispanic Non-White Population

*CHSDA Counties only

Cancer Data

6,272Malignant Cases
0.4%% of US Malignant Cases

Registry type

NPCR

Year registry became population-based

1987

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

Study Participation

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

Yes

Data request submission first step

Cancer Registry

Local/State IRB Review Requirements

IRB of record

Rhode Island Department of Health

IRB Federalwide Assurance Number

FWA00006141

IRB forms available online

Yes

IRB homepage URL

http://www.health.ri.gov/programs/detail.php?pgm_id=145

Method to submit IRB forms

IRB meeting frequency

Quarterly

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

Yes

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); At end of study

Is notification of data destruction required

Publication review requirements

30 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

Yes

Consent Requirements

Physician consent is required before patient contact

Patient consent is obtained by

Researcher

Pediatric research special requirements

Yes

Describe pediatric research considerations

please see the IRB Policy Manual

Registry fees

Registry fees are charged to obtain data

IRB fees

IRB review fees required

Rhode Island CaRI Database Information