CiNA RESEARCH DATASETS

NAACCR receives de-identified resident cancer case information from member registries across the US and Canada. With the permission of submitting registries, NAACCR combines the incidence data from registries that meet all NAACCR standards for completeness and quality into a comprehensive dataset, the CiNA Research Dataset. This dataset can be used to calculate incidence, survival, or prevalence statistics

• The CiNA Research Dataset is available to NAACCR members, or researchers working with a NAACCR member, who are interested in using the data for cancer surveillance research.
• The CiNA Research Dataset is also available to NAACCR Workgroups/Taskforces for data assessment or methodological evaluation and requires approval by NAACCR Staff.
• Researchers may request access to the CiNA Research Analytic File by submitting an application to NAACCR via DaRT.

Important steps before submitting an application request:

First, review information found in the below links including the following:

• The CiNA Dataset Variables List which identifies the variables that are available in the file. Review the list to determine if the file contains the data necessary for your analysis.
• Registry Data Fitness for Use By Data Year, Inception Year by Registry: These describe the CiNA research dataset inclusion criteria including which central registries are included in the file and the years for which data from each registry are included in the CiNA Datasets.

Second, develop a working knowledge of cancer surveillance methods and an understanding of the data coding schemes used for your proposed study period. For researchers outside of a cancer registry, this can be facilitated by collaborating with a NAACCR member.

RESOURCES TO UNDERSTAND CiNA DATASETS

CiNA Dataset Variables List 1995 – 2021– Updated 8/23/24

This spreadsheet lists variables available in each CiNA Dataset (include the Public Use Dataset). Please review to determine which dataset is appropriate for your research. This list is updated annually in coordination with the release of the latest CiNA Dataset (spring).

Registry Data Fitness for Use By Data Year (1995-2021)

Registry Data Fitness for Use for Survival & Prevalence By Data Year (1995-2020)

This is a list of registries with data identified as fit for use for research and included in the CiNA Dataset. This list is updated annually in coordination of the release of the latest CiNA Dataset (spring).

Inception Year by Registry – 2/22/18

This is a list of registries with their initial year of population-based coverage.

Data Quality Assessments – data quality assessments for selected variables

Data Item Notes – limitations of selected variables

APPLICATION PROCESS AND REQUIREMENTS

• Applications must be made through the DaRT system.
• Applications for the CiNA Research Dataset must include at least one NAACCR member as the Principal Investigator or co-Principal Investigator.

1. Applications must be submitted in English.
2. Researchers must have approval from the NAACCR Research Application and Review Workgroup (RaPR) for each proposed research project to access the data.
3. Research proposals, all documents that accompany proposals, and communications about proposals are confidential. NAACCR Research Application and Review Workgroup (RApR) members will maintain confidentiality of all documents related to CiNA requests.
4. After project approval, NAACCR will obtain consent from all eligible registries to participate in the research project prior to releasing the data.
5. If, when proposing to analyze CiNA data, researchers select a single state or province as the research subject, NAACCR will require Active Consent from the registry prior to data release.
6. NAACCR will review all publication results from each CiNA Research Dataset prior to publication.
7. Copies for review must be provided in English.

NON-MEMBER RESEARCHER DATA ACCESS to the CiNA research dataset

NAACCR Individual Membership

Individual NAACCR memberships are intended for individuals who are connected with the NAACCR cancer surveillance community and generally active on one or more NAACCR Workgroups or Taskforces, but who are not staff at a member registry or agency. Individual memberships are not appropriate solely for the purposes of access to the CiNA Dataset.

More information describing membership can be found here: https://www.naaccr.org/become-a-member/#individualmembership.

For individuals who are not NAACCR members but are interested in using the CiNA Research Dataset for research or other analytic purposes, collaboration with a current NAACCR member is required.

For non-NAACCR members, NAACCR member collaborators may be identified via the following mechanisms:

1. Contacting a NAACCR member registry directly https://my.naaccr.org/member-directory,
2. Contacting a NAACCR member staff member directly, or
3. Contacting Recinda Sherman, NAACCR Program Manager of Data Use and Research

Note: A NAACCR member must be listed as a co-investigator in order to submit a research proposal in DaRT.

Engagement Strategy to connect with NAACCR Member Collaborators:

In the absence of existing collaborations, the non-NAACCR member investigators will contact Recinda Sherman. After establishing that the project is feasible using available CiNA data, Dr. Sherman will work with the research team to identify a NAACCR co-investigator who is appropriate for the project. If necessary, the proposal will be passed to the CiNA Writing Network Workgroup (CWN WG), and CWN WG will work with the investigators to identify one or more appropriate NAACCR member co-investigators.

NAACCR member researcher responsibilities: NAACCR member co-investigators must be familiar with the analysis of national cancer registry data and, ideally, will also have familiarity with the subject matter of the proposal. The NAACCR member co-investigator(s) must commit to providing substantive engagement with the non-NAACCR member investigators in the conduct of their research or analytic project. Because CiNA data are collected primarily for cancer surveillance, this collaboration is intended to ensure that the nuance of the cancer surveillance data is accommodated for in the project methodology. The role of the NAACCR members is technical consultation primarily during methods development and interpretation. This collaborative structure also serves to strengthen ties between NAACCR and the cancer research community more generally.

Non-NAACCR member researcher responsibilities: The non-NAACCR member must commit to inviting the NAACCR member to be a full collaborator on the project. Other guidelines for the NAACCR member(s) engaged in research or analytic projects with non-NAACCR members and using the CiNA Research Dataset should mirror those of International Committee of Medical Journal Editors (http://www.icmje.org/recommendations/browse/roles-and-responsibilities/defining-the-role-of-authors-and-contributors.html).