Last Reviewed: Dec. 5, 2022

Los Angeles Cancer Surveillance Program -USC

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Registry Data

Population Data

10,081,762Total Population Count
3.1%% of US Population
2.2%% of US Black Population
7.9%% of US API Population
0.0%% of US AI/AN* Population
8.5%% of US Hispanic Population
5.8%% of US Hispanic Non-White Population

*CHSDA Counties only

Cancer Data

40,309Malignant Cases
2.4%% of US Malignant Cases

Registry type

NPCR/SEER

Year registry became population-based

1972

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

1972

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	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)?

Yes

Type of request forms required

Separate IRB and Registry forms

Initial cancer registry contact/discussion required prior to submitting (or completing) application

Data request submission first step

Cancer Registry

Local/State IRB Review Requirements

IRB of record

California Committee for the Protection of Human Subjects

IRB Federalwide Assurance Number

00000681

IRB forms available online

Yes

IRB homepage URL

https://www.chhs.ca.gov/cphs/#about-us

Method to submit IRB forms

Online submission

Online IRB submission URL

https://www.chhs.ca.gov/cphs/#about-us

IRB meeting frequency

Every other month

2nd IRB of record

USC IRB

2nd IRB Federalwide Assurance Number

00005906

2nd IRB forms available online

Yes

2nd IRB homepage URL

https://istar.usc.edu/

Method to submit 2nd IRB forms

Online submission

2nd IRB meeting frequency

Monthly

Registry Review Requirements

Registry Data Request Form URL(s)

URL	Description
https://www.ccrcal.org/retrieve-data/data-for-researchers/how-to-request-ccr-data/

Method to submit Registry data request

Registry review meeting frequency

As needed

Registry Data Release Policy/Procedure URL(s)

URL	Description
https://www.ccrcal.org/retrieve-data/data-for-researchers/how-to-request-ccr-data/

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

URL	Description
https://www.ccrcal.org/retrieve-data/data-for-researchers/how-to-request-ccr-data/

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

Yes

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

As noted in approved documents (e.g. IRB/Registry Application, DUA, Confidentiality Agreement); Annual justification to retain data is required

Is notification of data destruction required

Yes

Describe what to include in the notification or provide the URL for a specific form

Recipient Institution agrees to destroy all files, documents or other records containing CCR data in their custody at the earliest opportunity consistent with the conduct of the proposed use unless there is a health or research justification for retention or retention required by law. Notwithstanding the foregoing, Recipient Institution and Principal Investigator agree to destroy all files, documents or other records containing CCR data in their custody no later than three years after the date of receipt unless the CCR Data Custodian, in its sole discretion, extends the deadline for destruction by written notice to Recipient Institution and Principal Investigator.

Destruction means physical destruction of files, documents or other records, and deidentification shall not be considered destruction. Immediately following the
destruction of CCR data, Recipient Institution agree to provide the CCR Data
Custodian with a written declaration, executed by an authorized representative of Recipient Institution, stating that the CCR data have been destroyed.

Publication review requirements

30 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

60 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

Document is currently being updated.

Registry data payment is due

Before researcher receives data

Registry fee structure summary