Last Reviewed: Dec. 2, 2024

Texas Cancer Registry

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Registry Data

Population Data

27,854,547Total Population Count
8.6%% of US Population
8.0%% of US Black Population
7.2%% of US API Population
0.5%% of US AI/AN* Population
19.0%% of US Hispanic Population
8.7%% of US Hispanic Non-White Population

*CHSDA Counties only

Cancer Data

114,144Malignant Cases
6.7%% of US Malignant Cases

Registry type

NPCR/SEER

Year registry became population-based

1995

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

1995

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/#6)

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	Yes
Re-Abstracting/Patterns of Care Studies	Yes	No
Survival Studies	Yes	No

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

The Texas Department of State Health Services (DSHS) Institutional Review Board (IRB)

IRB Federalwide Assurance Number

FWA00008616

IRB forms available online

Yes

IRB homepage URL

https://www.dshs.texas.gov/office-practice-learning/institutional-review-board-irb

Method to submit IRB forms

Online submission

Online IRB submission URL

https://www.dshs.texas.gov/office-practice-learning/institutional-review-board-irb/requesting-access-dshs-irb-oneaegis-system

IRB meeting frequency

Monthly

Registry Review Requirements

Registry Data Request Form URL(s)

URL	Description
https://www.dshs.texas.gov/texas-cancer-registry/data-requests-tcr/confidential-data-request-irb	Texas Cancer Registry Confidential Data Request Form

Method to submit Registry data request

Registry review meeting frequency

As needed

Registry Data Release Policy/Procedure URL(s)

URL	Description
https://www.dshs.texas.gov/tcr/data/policy.aspx	Texas Cancer Registry Data Release Policy

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

URL	Description
https://www.dshs.texas.gov/office-practice-learning/institutional-review-board-irb/forms-instructions	Required Memorandum of Understanding (MOU) and Data Use Agreement (DUA) after IRB approval

Process

Processing timeframe for linkage studies and de-identified data release

3-6 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

There are additional required forms for patient contact studies and linkage studies. These forms are found here: https://www.dshs.texas.gov/tcr/data/research.aspx. The TCR requests that data provided for data linkage are in a specified format, described here: https://www.dshs.texas.gov/tcr/data/linkages.aspx. The TCR has guidelines for research involving patient contact, found here: https://www.dshs.texas.gov/tcr/data/patient-contact-studies.aspx.

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

Completion of the Certificate of TCR Data Destruction, which is found here: https://www.dshs.texas.gov/sites/default/files/tcr/data/research/Certificate-of-TCR-Data-Destruction.pdf

Publication review requirements

N/A

Data use agreement renewal requirements

As determined in the required MOU/DUA.

IRB progress report requirements

As determined in the initial IRB approval. Typically 1-2 years.

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

Patient consent is obtained by

Researcher

Pediatric research special requirements

Registry fees

Registry fees are charged to obtain data

IRB fees

IRB review fees required

Texas CaRI Database Information