Last Reviewed: Dec. 1, 2023

Connecticut Tumor Registry

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Registry Data

Population Data

3,580,920Total Population Count
1.1%% of US Population
1.0%% of US Black Population
0.9%% of US API Population
0.9%% of US AI/AN* Population
1.0%% of US Hispanic Population
1.5%% of US Hispanic Non-White Population

*CHSDA Counties only

Cancer Data

21,039Malignant Cases
1.2%% of US Malignant Cases

Registry type

SEER

Year registry became population-based

1935

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

1935

Data linked with medicare

Yes

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/#17)

Study Participation

Research Type	Experience with Studies	Interested in Studies
Case Contacts Studies	Yes	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	Yes	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

Connecticut Department of Public Health Human Investigations Committee

IRB Federalwide Assurance Number

FWA00001517

IRB forms available online

Yes

IRB homepage URL

https://portal.ct.gov/DPH/Communications/Services--Programs/Human-Investigations-Committee

Method to submit IRB forms

IRB meeting frequency

Monthly

Process

Processing timeframe for linkage studies and de-identified data release

1 - 3 months

Processing timeframe for patient contact studies

1 - 3 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

Patient contact studies may be carried out in collaboration with the Yale Rapid Case Ascertainment Shared Resource (RCA). RCA can also provide assistance with biospecimen research studies and with IRB approval processes. RCA operates on a fee-for-service basis. For further information, go to: https://www.yalecancercenter.org/research/resources/rapid.aspx

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; At end of study; 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

Confirmation of data destruction.

Publication review requirements

30 days in advance

Data use agreement renewal requirements

A full HIC application must be submitted for ongoing studies every 5 years. Approval of these 5-year resubmissions results includes signing of new Agreements.

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

Yes - Active

Physician consent is obtained by

Registry

Patient consent is obtained by

Researcher

Pediatric research special requirements

Yes

Describe pediatric research considerations

Researchers planning to undertake research involving children should contact the DPH HIC Chair prior to submitting an application. Additional assurances may be required depending on the type of research.

Registry fees

Registry fees are charged to obtain data

IRB fees

IRB review fees required

Connecticut CaRI Database Information