Last Reviewed: Nov. 21, 2024

Cancer Registry of Greater California

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Registry Data

Population Data

21,661,299Total Population Count
6.7%% of US Population
3.0%% of US Black Population
12.6%% of US API Population
15.4%% of US AI/AN* Population
14.7%% of US Hispanic Population
12.3%% of US Hispanic Non-White Population

*CHSDA Counties only

Cancer Data

97,672Malignant Cases
5.7%% of US Malignant Cases

Registry type

SEER

Year registry became population-based

1988

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

1988

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

Study Participation

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

Yes

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

Committee for the Protection of Human Subjects

IRB Federalwide Assurance Number

FWA00000681

IRB forms available online

Yes

IRB homepage URL

https://www.cdii.ca.gov/committees-and-advisory-groups/committee-for-the-protection-of-human-subjects-cphs/

Method to submit IRB forms

Online submission

Online IRB submission URL

https://chhs.my.irbmanager.com/Login.aspx

IRB meeting frequency

Every other month

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

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; 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

Email at research@crgc-cancer.org indicating that data have been destroyed.

Publication review requirements

N/A

Data use agreement renewal requirements

None

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

Patient consent is obtained by

Researcher

Pediatric research special requirements

Registry fees

Registry fees are charged to obtain data

Yes

Registry data fee exceptions

Registry data payment is due

Before researcher receives data

Registry fee structure summary

https://crgc-cancer.org/wp-content/uploads/2019/11/Updated-CRGC-Data-Disclosure-Service-Fees_11-13-2019.pdf

Registry fee structure URL