Last Reviewed: Nov. 24, 2021

South Carolina Central Cancer Registry

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Registry Data

Population Data

4,955,789Total Population Count
1.5%% of US Population
3.1%% of US Black Population
0.5%% of US API Population
1.2%% of US AI/AN* Population
0.5%% of US Hispanic Population
0.7%% of US Hispanic Non-White Population

*CHSDA Counties only

Cancer Data

27,845Malignant Cases
1.6%% of US Malignant Cases

Registry type

NPCR

Year registry became population-based

1994

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

1996

Data linked with medicare

Years included in CINA Deluxe

1997-2015

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/#15)

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	No	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

IRB form for both reviews

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

South Carolina Department of Health and Environmental Control IRB

IRB Federalwide Assurance Number

00003803

IRB forms available online

IRB homepage URL

https://www.scdhec.gov/

Method to submit IRB forms

IRB meeting frequency

Quarterly

Registry Review Requirements

Registry Data Request Form URL(s)

URL	Description
https://scdhec.gov/CancerRegistry/Data	Protocol for data release

Method to submit Registry data request

Registry review meeting frequency

As needed

Registry Data Release Policy/Procedure URL(s)

URL	Description
https://www.scdhec.gov/data-release-rules	data release process and forms

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

URL	Description
https://www.scdhec.gov/data-release-rules	data release process and forms

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

Yes

Collaboration with local researcher required

Initial required documentation

Step-by-Step data request submission process

Other requirements and helpful information for researchers

Contact registry during planning phase. Incorporate funds into grant, if needed.

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

Name of PI
Name of Study
Date of Destruction
Method of Destruction

Publication review requirements

30 days in advance

Data use agreement renewal requirements

None

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

Yes - Passive

Physician consent is obtained by

Registry

Patient consent is obtained by

Registry

Pediatric research special requirements

Registry fees

Registry fees are charged to obtain data

Yes

Registry data fee exceptions

Most student projects (e.g., thesis), some collaborative projects (e.g., SCCCR partner in project)

Registry data payment is due

Before researcher receives data

Registry fee structure summary

Charges for staff time and data
https://scdhec.gov/CancerRegistry/Data
(see Schedule of Fees - note: this is currently under review for updates)

Registry fee structure URL

https://scdhec.gov/CancerRegistry/Data

IRB fees

IRB review fees required

South Carolina CaRI Database Information