Cancer in North America CiNA Data Products

Cancer in North America CiNA Data Products

CiNA DATA PRODUCTS OVERVIEW

NAACCR receives de-identified population-based cancer data from member registries across the US and Canada. With permission from the registries, NAACCR combines the cancer incidence data from submitting registries into comprehensive datasets for analysis. These datasets only include data from registries that meet NAACCR requirements for completeness and quality. Researchers may request access to the CiNA datasets, irrespective of their affiliated institution’s geographic location.

Requirements for data access vary by product and, at a minimum, include a signed Data Use or Data Assurance agreement. Depending on the dataset, additional requirements may include NAACCR Membership, NAACCR Research Application Review (RaPR) Committee Approval, and being a SEER institutional account holder.

 

NAACCR supports multiple CiNA data products:

  • CiNA Explorer is an on-line, publicly accessible, interactive data visualization tool for quick access to cancer incidence statistics for major cancer sites.
  • CiNA Maps is an on-line, publicly accessible, interactive mapping too for quick access to cancer incidence statistics for major cancer sites for last five years.
  • CiNA Public Use Dataset is a publicly accessible and limited incidence dataset requiring only a signed Data Assurance Agreement for access.
  • CiNA Research Dataset is a de-identified incidence, survival or prevalence dataset that may be used to conduct research.
    • Applications for the CiNA Research Dataset must include at least one NAACCR member as the Principal Investigator or co-Principal Investigator.
      1. Uniform guidelines apply to researchers in or outside the U.S. and Canada.
      2. Applications must be submitted in English.
    • Researchers must have approval from the NAACCR Research Application (RaPR) Committee for each proposed research project to access the data.
      1. 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.
      2. 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.
    • Applications NAACCR will review all publication results from CiNA Research Dataset prior to publication.
      1. Copies for review must be provided in English.
    • CiNA Research Dataset is also available to NAACCR Workgroups/Taskforces for data assessment or methodological evaluation and requires approval by NAACCR Staff.
    • Data are released via SEER*Stat and require a SEER institutional account.
    • More information about the CiNA Research Dataset may be found here: https://staging.naaccr.org/cina-research/
    • Request access to these data via the CiNA Dataset for Researchers option in DaRT: https://apps.naaccr.org/dart

Important steps before submitting an application request:

  • The list below (CiNA Dataset Variables List) identifies the variables that are available in the file. Review the list to determine if the file contains the data necessary for your analysis.
  • Develop a working knowledge of cancer surveillance methods and an understanding of the data coding schemes used for your proposed study period.
  • Review and understand the CiNA Research inclusion criteria, which central registries are included in the file, and the years for which data from each registry are included in the CiNA Datasets (Registry Data Fitness for Use By Data Year).
  • If you are not a NAACCR member, contact a NAACCR member registry or other member organization and discuss your proposal idea to determine if it is feasible based on available CiNA Deluxe data. The principal investigator for any CiNA Research application must be a NAACCR member. Researchers who are not NAACCR members may serve as co-investigators and/or apply for individual membership.

To request any of the CiNA Datasets, including registry-only like delay-adjusted, please use DaRT, the NAACCR Data Request Tracking system.

Resources to Understand CiNA Datasets

CiNA Dataset Variables List – Updated 06/16/2020 This is a list of variables available in each CiNA Data File. Please review to determine which dataset is appropriate for your research.

Registry Data Fitness for Use By Data Year (1995-2019) – Updated 7/20/22

Inception Year by Registry – 2/22/18

Data Quality Assessments: click here for data quality assessments for selected variables

 

NAACCR Membership and Non-Member Researcher Data Access

Access to CiNA data requires a NAACCR Member.

Individual NAACCR membership applications are reviewed and approved by the NAACCR Board and will not be approved solely for the purposes of access to data for analytic or research projects. 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. More information describing membership can be found here: https://staging.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, co-investigators that are also NAACCR members may be identified via the following mechanisms:

  1. Contacting a NAACCR member directly.
  2. Contacting a NAACCR member registry directly.
  3. Contacting Recinda Sherman, NAACCR Program Manager of Data Use and Research (rsherman@naaccr.org)

 

In the absence of an existing collaboration with a NAACCR member, we recommend that non-NAACCR members contact Dr. Sherman prior to submitting a CiNA Research Dataset application. The purpose of this connection is to discuss the feasibility of the proposal as it relates to CiNA data and to identify to potential NAACCR member collaborators. 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

Individual members requesting access to CiNA Research Dataset must have at least one engaged NAACCR member co-investigator. 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 Research Network (CRN), and CRN will work with the investigators to identify one or more appropriate NAACCR member co-investigators.

 

NAACCR member co-investigators must have familiarity 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 specific research. This collaborative structure also serves to strengthen ties between NAACCR and the cancer research community more generally.

 

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).

 

Delay Adjustment Factors and Rates

State-Level Delay Adjustment Factors are available to registry personnel for their own state as a Registry-Specific Dataset. National-Level Delay Adjustment Factors are available for research as a special request CiNA Dataset through DaRT Learn More.

 

We encourage registries to evaluate their state-specific delay adjustment factors and rates. To obtain access to the delay adjustment data for your state in SEER*Stat, please use DaRT .

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