Last Reviewed: Nov. 13, 2023

West Virginia Cancer Registry

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Registry Data

Population Data

1,828,771Total Population Count
0.6%% of US Population
0.2%% of US Black Population
0.1%% of US API Population
0.0%% of US AI/AN* Population
0.1%% of US Hispanic Population
0.1%% of US Hispanic Non-White Population

*CHSDA Counties only

Cancer Data

12,028Malignant Cases
0.7%% of US Malignant Cases

Registry type

NPCR

Year registry became population-based

1993

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/#22)

Study Participation

Research Type	Experience with Studies	Interested in Studies
Case Contacts Studies	No	No
Geospatial Studies	No	No
Linkage Studies	Yes	No
Rapid Case Ascertainment Studies	No	No
Re-Abstracting/Patterns of Care Studies	No	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.cancerregistry.wv.gov	Contact Steven.E.Blankenship@wv.gov

Method to submit Registry data request

Registry review meeting frequency

Quarterly

Registry Data Release Policy/Procedure URL(s)

URL	Description
http://www.cancerregistry.wv.gov	Contact Steven.E.Blankenship@wv.gov

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

URL	Description
http://www.cancerregistry.wv.gov	Contact Steven.E.Blankenship@wv.gov

Process

Processing timeframe for linkage studies and de-identified data release

1 - 3 months

Processing timeframe for patient contact studies

N/A

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

Data request forms are not currently posted to registry website. Please contact Steven.E.Blankenship@wv.gov to discuss study and obtain forms.

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

Please contact Steven.E.Blankenship@wv.gov to request the WVCR Certificate of Data Destruction.

Publication review requirements

N/A

Data use agreement renewal requirements

None

IRB progress report requirements

None

How far in advance of IRB expiration must IRB renewal be submitted

N/A

Participates in VPR

Yes

Consent Requirements

Physician consent is required before patient contact

N/A - No patient contact studies

Pediatric research special requirements

Registry fees

Registry fees are charged to obtain data

Yes

Registry data fee exceptions

Fees are charged for data linkages, but not for summary data requests.

Registry data payment is due

After researcher receives data

Registry fee structure summary

The registry charges a flat $800 fee for data linkages that must be performed for the study. An additional $50 per hour is charged for staff time required to complete the linkage.

Registry fee structure URL

IRB fees

IRB review fees required

West Virginia CaRI Database Information