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Geographic Information System
for Breast Cancer Studies on Long Island (LI GIS)


LI GIS Data Use Agreement Form
Data Use Agreement cover


Apply for Data Use

Overview

Researchers may gain access to the LI GIS itself and its Data Warehouse subject to certain restrictions through an approval process. Researchers are not allowed access to the Data Warehouse unless they have completed the approval process. With National Cancer Institute (NCI) approval of the research project, the LI GIS contractor will provide the researcher with a secure ID and set up the user with appropriate username, password, and data access. This Web page provides the LI GIS Data Use Agreement form and:

  • an overview of the process for obtaining access to LI GIS and its data
  • information on the content of the LI GIS Data Use Agreement and instructions
  • requirements for submission of research proposals
  • description of the proposal review process
  • criteria for the evaluation of research proposals.

Access to the LI GIS is at no expense to the researcher. However, special requests may involve costs to the researcher. Research funding is not provided.

Access to Breast Cancer Data

Data on relative breast cancer incidence (observed/expected) by ZIP Code for Nassau and Suffolk counties for 1973-1997 are available within the LI GIS because these data are publicly available from the New York State Department of Health (DOH) in that form. However, researchers must obtain access to more precise information about the location of breast cancer patients or other breast cancer data separately from the DOH Cancer Registry. Direct requests to the New York State Cancer Registry.

Instructions for Submitting Application for Access to the LI GIS and its Data

Researchers must include in their requests for LI GIS access:

  1. The completed LI GIS Data Use Agreement Form (Word, PDF). This form describes the responsibilities associated with using the LI GIS data. The principal investigator of the project, as well as all individuals who are working under his/her direction and who access the LIG GIS must sign the Data Use Agreement.
  2. Brief written research proposal describing the project and how the LI GIS data will be used. See Research Proposal Requirements.
  3. If your organization is a consulting firm, contractor, or pharmaceutical company, your proposal must include information about the funding source and a letter from the funder indicating that you are free to work and publish your findings without limitations by the funder.

Submit completed application materials to the NCI LI GIS contact listed below. The completed application form may be submitted via facsimile machine. However, the application, including original signatures, must ultimately be sent by mail.

Deborah M. Winn, Ph.D.
LI GIS Co-Project Officer
Deputy Director
Division of Cancer Control and Population Sciences
National Cancer Institute
National Institutes of Health
9609 Medical Center Drive, Room 4E344
Rockville, MD 20850
Phone: (240) 276-6755
Fax: (240) 276-7908
E-mail: winnde@mail.nih.gov

Contents of the LI GIS Data Use Agreement

The LI GIS Data Use Agreement has three sections.

Section 1 asks for information about the researcher, the major purposes of the research, and other funding for the project, if any. All individuals who will have access to the LI GIS must be listed and sign the agreement (Section 3).

Section 2 states the terms and agreements to which the researcher agrees.

Section 3 is for researchers to sign signifying agreement with the terms and agreements.

Upon approval of the LI GIS Data Use Agreement, the user will be issued a LI GIS Application Server username and password that will allow the user to log in to the LI GIS Application Server.

Research Proposal Requirements

The research proposal should not exceed four pages of double spaced text. The application should include the following sections:

  • Study design
  • Hypothesis — Clearly state the hypotheses to be tested
  • Background and significance
  • Approach — Indicate the analytic approach and data requirements
  • Statistical analysis — Indicate what analytical techniques will be applied
  • If access to restricted datasets is requested, the proposal must clearly justify the need for access to these data.

Proposal Review Process

The review and approval process is the responsibility of the NCI LI GIS staff. The reviewers will include NCI staff with expertise in geographic information systems and epidemiology.

If NCI has concerns about confidentiality arising from a project, researchers may revise their proposals. However, if there are ongoing concerns about confidentiality, researchers will not be able to access LI GIS data regardless of whether funding has been obtained from another agency or organization to conduct an analysis using the data. Therefore, researchers who are planning to use the LI GIS data as part of a grant are encouraged to obtain NCI's approval for access to the data before submitting their grant proposals.

Criteria for Approving Requests

NCI encourages outside researchers to use LI GIS data. Some of the criteria, in addition to scientific merit, that NCI uses to assess the projects include whether the:

  • proposed research involves data that may compromise the privacy or confidentiality of patients, providers, or institutions
  • central purpose of the study is not research or evaluation
  • research goals are not feasible using the LI GIS data
  • data processing necessary to produce the requested files places an unusually heavy burden on data processing staff.