Last Reviewed: Jan. 31, 2024

New Jersey State Cancer Registry

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Registry Data

Population Data

8,874,970Total Population Count
2.8%% of US Population
3.1%% of US Black Population
4.3%% of US API Population
0.0%% of US AI/AN* Population
3.1%% of US Hispanic Population
4.4%% of US Hispanic Non-White Population

*CHSDA Counties only

Cancer Data

52,530Malignant Cases
3.1%% of US Malignant Cases

Registry type

NPCR/SEER

Year registry became population-based

1978

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

1979

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/#18)

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

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

Rutgers Biomedical and Health Sciences

IRB Federalwide Assurance Number

FWA00003913

IRB forms available online

Yes

IRB homepage URL

https://orra.rutgers.edu/hspp

Method to submit IRB forms

Online submission

Online IRB submission URL

http://eirb.rutgers.edu

IRB meeting frequency

Monthly

Registry Review Requirements

Registry Data Request Form URL(s)

URL	Description
https://healthapps.state.nj.us/forms/ces4.aspx	Aggregate Data Request

Method to submit Registry data request

Registry review meeting frequency

As needed

Registry Data Release Policy/Procedure URL(s)

URL	Description
https://nj.gov/health/ces/contact.shtml	Contact NJSCR for policy

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

URL	Description
https://nj.gov/health/ces/contact.shtml	Contact NJSCR for Agreements

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

Yes

Collaboration with local researcher required

Yes

Initial required documentation

Step-by-Step data request submission process

Other requirements and helpful information for researchers

For patient contact studies:
+ NJSCR will make the first contact to patients
+ Patients are only contacted for one study at a time

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); Annual justification to retain data is required; 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

Subject to any applicable informed consent, within thirty (30) days upon the earlier of, IRB closure of the research project, or the expiration or termination of this Agreement, the RESEARCH ORGANIZATION shall securely destroy the NJSCR Data provided in compliance with the applicable privacy policies and secure media sanitization requirements; such as the New Jersey Statewide Information Security Manual. Within twenty-four (24) hours following the destruction of the Data, the RESEARCH ORGANIZATION shall provide the Data Provider with written confirmation via email attesting to the completion of such destruction.

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

More than 60 days

Participates in VPR

Yes

Consent Requirements

Physician consent is required before patient contact

Depends on Study

Physician consent is obtained by

Registry

Patient consent is obtained by

Registry

Pediatric research special requirements

Registry fees

Registry fees are charged to obtain data

Yes

Registry data fee exceptions

Contact the Registry for more information as fees vary based on work required.

Registry data payment is due

Before researcher receives data

Registry fee structure summary

Contact the Registry for more information as fees vary based on work required.

Registry fee structure URL

IRB fees

IRB review fees required

Yes

Irb data fee exceptions

NIH and certain other federal or state funded projects may be exempt from IRB fees. Reach out to us for questions.

IRB fee amounts

https://research.rutgers.edu/

New Jersey CaRI Database Information