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Introduction
The Cohort Catalog describes a remarkable collection of study populations of former military personnel assembled as part of proposed or completed research dating back to the 1940's. These cohorts as compiled do not exist anywhere else. Cohorts range in size from small lists, for example, 1,550 veterans with Korean Hemorrhagic Fever, to huge datasets created by selecting samples of all persons admitted to military hospitals during certain periods, such as World War II (1941-1944).
The catalog provides summary information for each listed cohort. Summaries contain background information about prior uses of the cohorts, basic descriptive statistics about cohort characteristics, listings of selected references, and lists of related index terms. Researchers interested in obtaining additional information about listed cohorts should contact the Medical Follow-up Agency (MFUA).
The Cohort Catalog is a dynamic work in progress. The catalog currently contains summary information for 48 cohorts. The size and content of the catalog will change over time as new cohorts are developed and as additional cohorts from years past are restored and added to the catalog.
Purpose of the Cohort Catalog
The Cohort Catalog is designed to provide researchers with an awareness of the data resources developed by the Medical Follow-up Agency, typically based on data made available by Federal Agencies. As discussed below, it does not describe a public-use database. The Cohort Catalog is ultimately intended to stimulate collaborative research activity between interested individuals or organizations and MFUA.
Access to Data
Cohorts represent compilations of data identified, obtained, processed, and maintained by MFUA as epidemiologically useful resources. However, much of the data described in the Cohort Catalog were made available to MFUA by Federal agencies under strict disclosure restrictions in accordance with the Privacy Act of 1974, 5 U.S.C. §552a, as ammended. Any further use of such data will require the specific authorization of the relevant Federal agency or agencies, such as the Health Care Financing Administration, the Department of Veterans Affairs, and specific branches of the Armed Forces. Collaborators will be required to sign Data Use Agreements in the form prescribed by the cognizant Federal agency prior to accessing data.
Research activities must be collaborative, involving the resources of both the collaborator and MFUA. Cohort specifications can not be purchased from MFUA, nor are they part of the public domain. Researchers interested in making collaborative use of MFUA-constructed cohorts are requested to submit a short written research "pre-proposal". In the event that collaborative research is pursued, a lengthier proposal will be required.
All proposals are subject to review by the Board of the Medical Follow-up Agency. MFUA will attempt to work with the collaborator to negotiate a Data Use Agreement with the relevant Federal agency or agencies for research proposals that receive the approval of the Board. All research proposals are subject to the approval of the National Academy of Sciences (NAS), the NAS Institutional Review Board, and as required to access cohort data, the relevant Federal agency or agencies.
Submitting Requests for Collaboration
Prospective collaborators are required to submit a brief written pre-proposal (a one to two page e-mail or letter) to MFUA, explaining their research interests. Pre-proposals should include, to the extent possible:
- Statement of problem and goals/objectives;
- Main hypotheses, which should be as specific as possible;
- Discussion of study subjects, measurement of key variables, specific variables required;
- Analytic methods;
- Personnel involved and time line for completion;
- An estimate of the funds required to support the proposed research, and listing of secured or potential funding source(s).
- Procedures in place for safeguarding data subject to the Privacy Act (may be an attachment to the pre-proposal).
Please observe a maximum pre-proposal length of two pages.
If there are any questions or concerns about a pre-proposal, those comments will be sent to the prospective collaborator. Collaborators may make modifications and re-submit the pre-proposal for review.
Contact:
Rick Erdtmann, M.D., M.P.H.
Medical Follow-up Agency
500 5th Street, NW
Washington, DC 20001
email: rerdtmann@nas.edu
phone: (202) 334-1925
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