Last Reviewed: March 6, 2019

Virginia Cancer Registry

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Registry Data

Population Data

8,409,556Total Population Count
2.6%% of US Population
3.9%% of US Black Population
3.0%% of US API Population
0.2%% of US AI/AN* Population
1.3%% of US Hispanic Population
1.8%% of US Hispanic Non-White Population

*CHSDA Counties only

Cancer Data

40,097Malignant Cases
2.4%% of US Malignant Cases

Registry type

NPCR

Year registry became population-based

1995

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

2001

Data linked with medicare

Years included in CINA Deluxe

1998-2000, 2002-2015

CINA survial years

Participates in the National Interstate Data Exchange Agreement program

Yes (Restrictions - https://www.naaccr.org/national-interstate-data-exchange-agreement/#5)

Study Participation

Research Type	Experience with Studies	Interested in Studies
Case Contacts Studies	Yes	No
Geospatial Studies	No	Yes
Linkage Studies	Yes	Yes
Rapid Case Ascertainment Studies	No	No
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

Separate IRB and Registry forms

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

VDH IRB

IRB Federalwide Assurance Number

FWA00000274

IRB forms available online

Yes

IRB homepage URL

http://www.vdh.virginia.gov/institutional-review-board/

Method to submit IRB forms

IRB meeting frequency

Quarterly

Registry Review Requirements

Registry Data Request Form URL(s)

URL	Description
http://www.vdh.virginia.gov/virginia-cancer-registry/data/	form to request incidence data

Method to submit Registry data request

Registry review meeting frequency

As needed

Registry Data Release Policy/Procedure URL(s)

URL	Description
http://www.vdh.virginia.gov/virginia-cancer-registry/virginia-reporting-laws/	Code of VA-details authority of Commissioner to release protected data

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

URL	Description
http://vdhweb.vdh.virginia.gov/information-management/data-governance/	Incidence data request form & link to IRB for PHI release

Process

Processing timeframe for linkage studies and de-identified data release

Less than 1 month

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

http://www.vdh.virginia.gov/institutional-review-board/

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

Yes

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

How the data was destroyed, when it was destroyed

Publication review requirements

30 days in advance

Data use agreement renewal requirements

Annual

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

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

The aggregate data, without PHI is free.

Registry data payment is due

After researcher receives data

Registry fee structure summary

The aggregate or incidence data, without PHI is free. We ask for $2000 for matching with PHI as long as the study has provisions for our costs. If not, we don't charge them.

Registry fee structure URL

IRB fees

IRB review fees required

Virginia CaRI Database Information