Last Reviewed: Jan. 23, 2020

Greater Bay Area Cancer Registry UC San Francisco

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Registry Data

Population Data

7,357,381Total Population Count
2.3%% of US Population
1.1%% of US Black Population
10.4%% of US API Population
0.0%% of US AI/AN* Population
3.3%% of US Hispanic Population
3.6%% of US Hispanic Non-White Population

*CHSDA Counties only

Cancer Data

33,182Malignant Cases
2.0%% of US Malignant Cases

Registry type

NPCR/SEER

Year registry became population-based

1973

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

1973

Data linked with medicare

Yes

Years included in CINA Deluxe

CINA survial years

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

IRB

Local/State IRB Review Requirements

IRB of record

California Protection of Human Subjects

IRB Federalwide Assurance Number

00000681

IRB forms available online

Yes

IRB homepage URL

https://oshpd.ca.gov/data-and-reports/data-resources/cphs/

Method to submit IRB forms

Online submission

Online IRB submission URL

https://oshpd.ca.gov/data-and-reports/data-resources/cphs/

IRB meeting frequency

Every other month

Registry Review Requirements

Registry Data Request Form URL(s)

URL	Description
https://cancerregistry.ucsf.edu/research/data-access

Method to submit Registry data request

Registry review meeting frequency

As needed

Registry Data Release Policy/Procedure URL(s)

URL	Description
https://cancerregistry.ucsf.edu/research/data-access

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

URL	Description
https://cancerregistry.ucsf.edu/research/data-access

Process

Processing timeframe for linkage studies and de-identified data release

3-6 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

see https://cancerregistry.ucsf.edu/research/data-access

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)

Is notification of data destruction required

Yes

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

see https://cancerregistry.ucsf.edu/research/data-access

Publication review requirements

N/A

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

Consent Requirements

Physician consent is required before patient contact

Depends on Study

Physician consent is obtained by

Researcher

Patient consent is obtained by

Researcher

Pediatric research special requirements

Registry fees

Registry fees are charged to obtain data

Yes

Registry data fee exceptions

student status

Registry data payment is due

After researcher receives data

Registry fee structure summary

https://cancerregistry.ucsf.edu/research/data-access

Registry fee structure URL