Last Reviewed: Nov. 21, 2024

Arizona Cancer Registry

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Registry Data

Population Data

6,940,638Total Population Count
2.2%% of US Population
0.9%% of US Black Population
1.4%% of US API Population
16.1%% of US AI/AN* Population
3.8%% of US Hispanic Population
3.2%% of US Hispanic Non-White Population

*CHSDA Counties only

Cancer Data

32,376Malignant Cases
1.9%% of US Malignant Cases

Registry type

NPCR

Year registry became population-based

1992

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

1995

Data linked with medicare

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/#32)

Study Participation

Research Type	Experience with Studies	Interested in Studies
Case Contacts Studies	Yes	No
Geospatial Studies	No	No
Linkage Studies	Yes	Yes
Rapid Case Ascertainment Studies	No	No
Re-Abstracting/Patterns of Care Studies	Yes	Yes
Survival Studies	No	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

IRB form for both reviews

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

Human Subjects Review Board of the Arizona Department of Health Services

IRB Federalwide Assurance Number

FWA00002311

IRB forms available online

Yes

IRB homepage URL

https://www.azdhs.gov/policy-intergovernmental-affairs/administrative-counsel-rules/counsel/index.php#hsrb

Method to submit IRB forms

IRB meeting frequency

Monthly

Registry Review Requirements

Registry Data Request Form URL(s)

URL	Description
https://www.azdhs.gov/policy-intergovernmental-affairs/administrative-counsel-rules/counsel/index.php#hsrb	No additional forms required; forms submitted to HSRB are sufficient.

Method to submit Registry data request

Registry review meeting frequency

As needed

Registry Data Release Policy/Procedure URL(s)

URL	Description
https://www.azdhs.gov/director/administrative-counsel-rules/counsel/index.php#hsrb	No procedure online listed; contact registry directly.

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

URL	Description
https://www.azdhs.gov/director/administrative-counsel-rules/counsel/index.php#hsrb	No procedure online listed; contact registry directly.

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

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

Yes

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

Certificate of Destruction form can be found at:
https://www.azdhs.gov/director/administrative-counsel-rules/counsel/index.php#hsrb

Publication review requirements

N/A

Data use agreement renewal requirements

Based on approved HSRB requirement.

IRB progress report requirements

Based on approved HSRB requirement.

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

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

IRB fees

IRB review fees required

Arizona CaRI Database Information