Last Reviewed: Nov. 24, 2020

Utah Cancer Registry

Print Full Details

Registry Data

Population Data

3,043,034Total Population Count
0.9%% of US Population
0.1%% of US Black Population
0.6%% of US API Population
1.1%% of US AI/AN* Population
0.7%% of US Hispanic Population
0.7%% of US Hispanic Non-White Population

*CHSDA Counties only

Cancer Data

10,831Malignant Cases
0.6%% of US Malignant Cases

Registry type

NPCR/SEER

Year registry became population-based

1966

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

1973

Data linked with medicare

Yes

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/#8)

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	Yes	No
Re-Abstracting/Patterns of Care Studies	Yes	No
Survival Studies	Yes	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
https://uofuhealth.utah.edu/utah-cancer-registry/research/	Please fill out our pre-application by clicking the green "Request cancer data" button on the top left of the page.

Method to submit Registry data request

Registry review meeting frequency

Monthly

Registry Data Release Policy/Procedure URL(s)

URL	Description
https://uofuhealth.utah.edu/utah-cancer-registry/docs/ucr-policies-procedures-disclosure.pdf	Data disclosure policy

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

URL	Description
https://rge.utah.edu/_resources/documents/rge-confidentiality-and-data-use-agreement.pdf	Confidentiality and data use agreement - required of all individuals with any data access.

Process

Processing timeframe for linkage studies and de-identified data release

Greater than 6 months

Processing timeframe for patient contact studies

Greater than 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

Registry requests annual progress reports during the period the study is approved to access Registry data. Researchers who are submitting manuscripts, abstracts, or presentations based on research that included Utah Cancer Registry data MUST submit these for advance review. UCR reviews for correct acknowledgement and to assure individuals cannot be identified.

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); Annual justification to retain data is required

Is notification of data destruction required

Yes

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

Certificate of disposition of data completed and submitted to the registry.

Publication review requirements

30 days in advance

Data use agreement renewal requirements

As noted in approved documents

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

Patient consent is obtained by

Registry

Pediatric research special requirements

Registry fees

Registry fees are charged to obtain data

Yes

Registry data fee exceptions

None

Registry data payment is due

Before researcher receives data

Registry fee structure summary

Fees are based on the salaries and effort of Registry staff members involved in meeting the request. Patient contact projects would also be charged for supplies, such as postage, paper, and envelopes. Staff effort estimates are based on previous experience with similar projects.

Note: University of Utah will charge facilities and administrative costs (F&A or indirects) in addition to Registry costs outlined above.

Registry fee structure URL

IRB fees

IRB review fees required

Utah CaRI Database Information