Last Reviewed: Oct. 26, 2021

Vermont Cancer Registry

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Registry Data

Population Data

624,557Total Population Count
0.2%% of US Population
0.0%% of US Black Population
0.1%% of US API Population
0.0%% of US AI/AN* Population
0.0%% of US Hispanic Population
0.0%% of US Hispanic Non-White Population

*CHSDA Counties only

Cancer Data

3,840Malignant Cases
0.2%% 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

1996-2015

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/#23)

Study Participation

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

Local/state IRB review only

Multiple local IRBs are required (e.g. Institutional registry and state registry)?

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

Agency of Human Services

IRB Federalwide Assurance Number

unknown

IRB forms available online

Yes

IRB homepage URL

https://humanservices.vermont.gov/about-us/central-office/public-records-research/institutional-review-board-irb

Method to submit IRB forms

IRB meeting frequency

Monthly

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

Yes

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

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

form available upon request

Publication review requirements

30 days in advance

Data use agreement renewal requirements

depends on study design

IRB progress report requirements

AHS IRB requires annual progress reports; VCR does not require copies.

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

30 days

Participates in VPR

Consent Requirements

Physician consent is required before patient contact

Depends on Study

Physician consent is obtained by

Registry

Patient consent is obtained by

Researcher

Pediatric research special requirements

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

$34.20/hour of analyst time

Registry fee structure URL

https://sos.vermont.gov/vsara/manage/information-governance/compliance/uniform-charges-schedule/

IRB fees

IRB review fees required

Vermont CaRI Database Information