Last Reviewed: Nov. 29, 2023

Alabama Statewide Cancer Registry

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Registry Data

Population Data

4,863,967Total Population Count
1.5%% of US Population
2.9%% of US Black Population
0.4%% of US API Population
0.3%% of US AI/AN* Population
0.4%% of US Hispanic Population
0.5%% of US Hispanic Non-White Population

*CHSDA Counties only

Cancer Data

26,900Malignant Cases
1.6%% of US Malignant Cases

Registry type

NPCR

Year registry became population-based

1996

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

2000

Data linked with medicare

Years included in CINA Deluxe

1998-2015

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/#7)

Study Participation

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

Contact Information

Required Review(s) and Initial Contact

Type of review required

Registry review only

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

Yes

Data request submission first step

Cancer Registry

Registry Review Requirements

Registry Data Request Form URL(s)

URL	Description
http://www.alabamapublichealth.gov/ascr/research.html	Research Application/Agreement for Disclosure of Confidential Data and Confidentiality Agreement

Method to submit Registry data request

Mail

Registry review meeting frequency

As needed

Registry Data Release Policy/Procedure URL(s)

URL	Description
http://alabamapublichealth.gov/ascr/research.html	Data Release Policy and Procedures

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

URL	Description
http://alabamapublichealth.gov/ascr/research.html	Research Application/Agreement for Disclosure of Confidential Data and Confidentiality Agreement

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

Patient contact studies for patients under 18 require active physician consent.
Patient contact studies for patients over 18 can use passive physician consent. The ASCR is required to give physicians a minimum of 6 weeks to respond for physician consent.

For NAACCR:
Please add a 4th category for IRB and Registry. This category would need to be for registry approval and state approval. The DOAR committee is not the full ADPH IRB and as such I could not fill out the required fields or IRB.

Procedures are likely to be revised within the next year

Data Use and Renewal Requirements

When must study investigators destroy registry data

At end of study; As noted in approved documents (e.g. IRB/Registry Application, DUA, Confidentiality Agreement)

Is notification of data destruction required

Publication review requirements

30 days in advance

Data use agreement renewal requirements

Alabama can only do 5 year agreements. At the end of that five years we would have to do a new agreement.

IRB progress report requirements

Annual

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

Yes - Passive

Physician consent is obtained by

Registry

Patient consent is obtained by

Researcher

Pediatric research special requirements

Yes

Describe pediatric research considerations

All pediatric studies require active consent.

Registry fees

Registry fees are charged to obtain data

Yes

Registry data fee exceptions

None

Registry data payment is due

After researcher receives data

Registry fee structure summary

The ASCR has a set fee structure but does not publish it. Justin will be more than happy to go over the fee structure during the conference call to discuss the project.

Registry fee structure URL

http://feestructureisnotonline.com

IRB fees

IRB review fees required

Alabama CaRI Database Information