Epidemiological Research Request -- Private Entities

How to Get to the Data Service for Epidemiological Research
Announcement Page
If SSA did not send the direct link to the Epidemiological Research Request
(http://www.ssa.gov/policy/about/epidemiology.html), follow these directions to find it through
Social Security’s main website:
1. Access the Social Security Online website at: http://www.socialsecurity.gov/
2. Scroll to the bottom and click on the Site Map icon
3. Scroll down left side of the Site Map page until you see “Office of Policy” and then click on
the Office of Policy Website at: about the Office of Policy
4. At the top of the page, click on “about the Office of Policy”
5. At the “About Us” Screen, click on “Major Responsibilities and Projects”
6. At the “Major Responsibilities and Projects” Screen, scroll down to bold heading entitled,
“Data Service for Epidemiological Research.” Below in the text of this heading is the link to
more information on “Service to Epidemiological Researchers to Provide Vital Status Data
on Subjects of Health Research.” Click on this website and it will take you to the
announcement entitled, “Announcement of Service to Epidemiological Researchers to
Provide Vital Status Data on Subjects of Health Research” (# 4190-29P).
7. The announcement describes the entire procedure required by health researchers to request
and obtain vital status information, and includes the application and links to the data
protection plan, and confidentiality statement.

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Site Map
An Index of Social Security Online

Instructions

Select A-Z below to get close to your topic
or just scroll through the list of topics on
this page.
A B C D E F G H I J K L M N O P Q
R S T U V W X Y Z

Actuarial
Information

The Office of the Actuary prepares reports on the
financial outlook of Social Security and historical
data on numbers of beneficiaries and average
benefits.

Publications
 The Trustees Report--Financial
Outlook for Social Security
 Actuarial Studies and Notes
Estimate your benefit with one of our
calculators
Automatic Increases --COLAs and WageIndexed Amounts
Program Data
 Trust Fund Financial Data --historical
data on trust fund operations and
investments
 Beneficiary Data --historical data on
numbers of beneficiaries and average
benefits
Actuaries at SSA

Advisory Board

The Social Security Advisory Board is an
independent, bipartisan Board created by
Congress and appointed by the President and
the Congress to advise the President, the
Congress, and the Commissioner of Social
Security on matters related to the Social Security
and Supplemental Security Income programs.

Appeals

Information on how to appeal a decision from
Social Security

Applying for
Benefits

Publications on the Appeals Process
Selected Appeals Forms
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Frequently Asked
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process

How To Apply For Social Security
Retirement Benefits
How To Apply For Social Security Disability

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Benefits
Apply for Retirement/Spouse`s Benefits
Online
Apply for Disability Benefits Online

Applying for a
Social Security
Number

How to Apply For a Replacement Social Security
Card

Baby Names

See the most popular given names by gender
and year of birth .

Benefits

Budget Documents

Change of Address

Operational Finances — SSA`s
Performance and Accountability Report for
Fiscal Year (FY) 2006
The FY 2007 Budget Proposal for the
Social Security Administration
Fiscal Year 2007 Annual Performance Plan
How to change your address
Change your address or phone number
online
Request or change direct deposit of checks

Schedule of Payments

Commissioner of
Social Security

The Commissioner of the Social Security
Administration is Michael J. Astrue.

What are the most
popular names
given to newborns?

Benefit Publications - a complete list of all
publications
Lista De Publicaciones En Español
(Spanish Publications)
Medicare Information
FAX Catalog -- Publications about benefits
by FAX
Social Security Disability Benefits
The Social Security Handbook -- A
comprehensive guide to all of Social
Security`s benefit programs
Latest COLA and how it was calculated
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Compute your own benefit with either our
Quick Calculator or Detailed Calculator
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Frequently Asked
Questions about
Changing Your
Address

The Social Security Statement - A
statement of your lifetime earnings and an
estimate of your benefits.
Estimate your benefit with one of our
calculators
How Your Retirement Benefit is Figured - A

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Congressional
Testimony
Cost-of-Living
Adjustment
(COLA)

publication on how your benefit is
computed
Formula for computing the primary
insurance amount (the basis for benefits)

Congressional Testimony -- Testimony before
Congress by SSA officials

Death

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2008 COLA Information - Detailed Benefit,
Tax and Wage-Indexed Changes for 2008
2008 COLA Fact Sheet
National average wage index and historical
series
OASDI contribution and benefit base
Exempt amounts under the retirement
earnings test
Amount of earnings a person must have to
be credited with a quarter of coverage
"Old-law" contribution and benefit base
Domestic worker coverage threshold
Substantial gainful activity amounts for
disabled beneficiaries

Report a Death
Search SSA's Death Master File

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A complete guide to the direct deposit of your
monthly benefits.

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Information

Frequently Asked
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Social Security Disability Programs
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Disabilities
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Improving the Disability Determination
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Employment at
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The kinds of positions that SSA usually recruits
for, the current job openings, employment office
addresses and phone numbers, and how to
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veterans
people with disabilities
students and college graduates
bilingual-bicultural applicants

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Fax Catalog

FAX Catalog -- Publications by FAX

Feedback

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After searching a Frequently Asked Question
database, you ask your question or leave your
comment.

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The Trustees Report--Financial Outlook for
Social Security

Forms

Social Security Forms - Common forms that you Find your form
need to do business with SSA. This page lists
using the Form
the forms or you can search the forms database. Search Tool:
If you need a form that is not currently available
for download, you should call 1-800-772-1213
(TTY 1-800-325-0778) to request the form.

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Handbook

comprehensive guide to all of Social Security`s
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History — A multimedia history of Social Security

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A special page for recent immigrants to America.

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Legislation -- Recent legislation affecting
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Congressional Testimony -- Testimony
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History of the Social Security Act
Use our Social Security Office Locator -Type in your postal ZIP code and we will
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Visit one of our Regional Home Pages -- All
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regional initiatives, local public information
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Medicare - The Official U.S. Government
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Medicare Premium Information - The new
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Getting Medicare, Other Health
Insurance, Other Benefits
 Complaints, Appeals, and Other
Medicare Rights
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Information on the Medicare Prescription
Drug Improvement and Modernization Act
of 2003
New Medicare Prescription Drug Plan
Latest Information on TRICARE


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Social Security Information in 15 languages.

Other Sites Of
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Security Online Users
Other SSA Sites -- How We are Organized

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Choose from the options below:

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(Select this if you received a password
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request code (Select this if you lost or
forgot your password or password request
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Planning
Documents

Operational Finances -- SSA`s Performance and
Accountability Report

Office of Policy

The Office of Policy serves as the Social Security
Administration's focal point for policy analysis
and research, evaluation, and statistics.

Step 2
Learn more about the Office of Policy.

Press Releases

Social Security Administration Press Releases

Prisoner Issues

Questions and answers concerning payment of
benefits to prisoners

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SSA Office of Policy

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U.S. Social Security Administration, Office of Policy
The Office of Policy serves as the Social Security Administration's focal point for
policy analysis and research, evaluation, and statistics. Learn more about the
Office of Policy.
Step 3

Recently Released
Portfolio Theory, Life-Cycle Investing,
and Retirement Income
Policy Brief No. 2007-02 (released October 2007)

There has been much discussion
recently about life-cycle funds and their
role in providing a secure retirement
income for older Americans. These
funds, which gradually shift account
assets from broad-based stock funds to
bond funds as a participant ages, are
becoming an important vehicle for
retirement savings. This policy brief
explores the economic rationale behind
the life-cycle approach and the
advantages and limitations of life-cycle
funds.
This document is available in the
following formats: HTML PDF
Considerations for Potential
Proposals to Change the Earliest
Eligibility Age for Retirement
Policy Brief No. 2007-01 (released October 2007)

The earliest eligibility age (EEA)
interacts with many other Social Security
program rules, including the benefit
formula and insured status requirements.
Proposals to increase the EEA could
affect some or all of these other rules
depending on how policymakers design
the proposal. By using a hypothetical
proposal that increases the EEA, this
policy brief illustrates how these
interations work and discusses the
options that policymakers would need to
consider.
This document is available in the
following formats: HTML PDF

http://www.ssa.gov/policy/

Quick Facts

Monthly Statistical Snapshot
Program Highlights
Frequently Asked Questions
About Social Security's Future
State Statistics
Congressional Statistics

Annual Statistical Supplement
The Supplement is a major resource for
data on the nation's social insurance
and welfare programs. The majority of
the statistical tables present information
about programs administered by the
Social Security Administration—the OldAge and Survivors Insurance and
Disability Insurance programs, known
collectively as Social Security, and the
Supplemental Security Income program.
In addition, data are presented on the
major health care programs—Medicare
and Medicaid—and incomemaintenance programs. The
Supplement also includes program
summaries and legislative histories that
help users of the data understand these
programs.
Subsections of the Supplement will be
posted on a flow basis as they become
available.

Edition currently in progress:
Annual Statistical Supplement,
2007
Most recently completed edition:
Annual Statistical Supplement,
2006

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Office of Policy: About Us

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U.S. Social Security Administration, Office of Policy

About Us
Learn more about:

Major Responsibilities and Projects
Organization and Staffing
Partnerships
Copyright and Use Policies

http://www.ssa.gov/policy/about.html

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Office of Policy: Major Responsibilities and Projects

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U.S. Social Security Administration, Office of Policy

Major Responsibilities and Projects
The Deputy Commissioner for Policy is the principal advisor to the Commissioner and
Deputy Commissioner of Social Security on issues relating to Social Security solvency and
retirement and income maintenance policy. The Deputy Commissioner for Policy heads
the Social Security Administration's (SSA's) Office of Policy, which is responsible for the
agency's policy analysis, policy research and evaluation, and statistical program. The
Office of Policy plays a key role in supporting SSA's strategic goal of achieving sustainable
solvency for Social Security and ensuring that the Social Security and Supplemental
Security Income (SSI) programs meet the needs of current and future generations. It helps
to educate the public about the financial challenges facing Social Security and provides
decision makers with analyses of the economic, distributional, and administrative aspects
of proposals to reform and modernize the program. Much of the office's work is made
publicly available through a quarterly journal and numerous statistical publications, both in
print and on the Internet.

Policy Analysis, Research, and Evaluation
The Office of Policy is responsible for analysis and research on policy initiatives for the
Social Security Old-Age, Survivors, and Disability Insurance (OASDI) programs and the
Supplemental Security Income program. Staff study the effects of those programs and of
changes to them on individuals, the economy, and program solvency.
The Office of Policy places a high priority on analysis that provides policymakers with the
information they need to understand the broad impact and distributional effects of reform
proposals. For such analysis, the office develops and uses microsimulation models that
estimate the consequences of proposed program changes on beneficiaries. For example,
the MINT (Modeling Income in the Near Term) model is a microdata system that can be
used to project demographic and economic characteristics of the baby-boom generation at
retirement and into the future. The distributional analysis MINT provides makes a unique
contribution to the solvency debate because it builds on actual earnings records matched
with survey data.
Other important policy analysis and research activities include:

In-depth analysis of Social Security reform proposals, including individual accounts;
Analyses of the interrelationships between the Social Security system, the national
economy, other income maintenance programs, and various socioeconomic factors;
Research and analysis on the relationship of the disability programs to Social
Security solvency and the financing of SSI;
Analyses of options to simplify the SSI program;
Studies of foreign and domestic retirement and income maintenance programs;
Preparation of analytical material on OASDI and SSI beneficiary and payment
provisions, employment, earnings, and employer classification; and
Analyses of administrative issues, including the functions that would be required to
administer individual accounts and their related costs.

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Statistics and Data Dissemination
The Office of Policy is the agency's source for statistics on the impact and operations of
the OASDI and SSI programs and on the earnings of the working and beneficiary
populations. This function involves developing and maintaining a series of detailed
statistical databases, preparing a broad range of statistical tables, producing statistical
compilations and publications both in print and on the Internet, and developing information
for special requests on current policy issues.
The statistical tables provide:

Information useful in evaluating current programs and proposed legislative and
program changes and in running the programs;
Data on beneficiaries in individual states, localities, or congressional districts;
Information about beneficiaries and expenditures of the Social Security program and
other major social insurance and welfare programs;
Specialized tables related to current issues; and
Input to outside publications such as the Ways and Means Committee's Green Book
and the Census Bureau's Statistical Abstract of the United States.

Users of these statistics include other SSA components, Congressional staff, other
executive branch agencies, policy organizations, State and local governments, educational
institutions, business organizations, and advocacy groups.
The microdata that SSA maintains on applicants for Social Security numbers, covered
workers, and beneficiaries also provide an invaluable resource for research, statistical,
and policy purposes. Demand for these data has been increasing, especially when they
are linked to survey data such as the Census Bureau's Survey of Income and Program
Participation and the University of Michigan's Health and Retirement Study. Those data
are particularly relevant to the debate about the future direction of Social Security. Various
laws and regulations control those data, access to them, and how they may be used.
Public Law 103-296 authorizes the disclosure of vital status information for epidemiological
research. Staff review each request to determine whether access is permitted and to
ensure that users will protect the confidentiality of the data. Since the Internal Revenue
Service (IRS) controls earnings data, requests involving such data must go through IRS's
approval process. Social Security and the Bureau of the Census are also working to
develop versions of those databases for public use.

Data Service for Epidemiological Research
SSA also provides a data service to health researchers involved in epidemiological
research. Specifically, for studies that contribute to a national health interest, SSA will
inform researchers about whether a subject of the study is alive or deceased. There is a
fee for this service. For more information, see "Service to Epidemiological Researchers to
Provide Vital Status Data on Subjects of Health Research."

Step 5

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U.S. Social Security Administration, Office of Policy

Service to Epidemiological Researchers to Provide Vital
Status Data on Subjects of Health Research
OMB No. 0960-0701

Summary
Section 311 of the Social Security Independence and Program Improvements Act of 1994
directed the Social Security Administration (SSA) to provide support to health researchers
involved in epidemiological research. Specifically, when a study is determined to
contribute to a national health interest, SSA will furnish information regarding whether a
study subject is shown on the SSA administrative records as being alive or deceased (vital
status). SSA will recoup all expenses incurred in providing this information.

Contacts
This service is available as of this date by contacting the Office of Research, Evaluation,
and Statistics (ORES):
Social Security Administration
Office of Research, Evaluation, and Statistics
4-C-15 Operations Building
6401 Security Boulevard
Baltimore, MD 21235-6401
Fax: 410-966-4071
In addition, further information about this service is available from the ORES
Epidemiological Coordinator at the above contact points, by e-mail at
ORES.Epidemiological.Requests@ssa.gov, or by telephone at 410-966-4868.
If you mail your request for this service via overnight express mail, please change the
building location in the above address to:
Room 4700 Meadows East Building

Supplementary Information
Background
Historically, SSA had made disclosures of vital status data under the provisions of the
Freedom of Information Act (FOIA, 5 U.S.C. 552(a)(3)). However, as a result of the
Supreme Court decision in United States Department of Justice v. Reporters Committee
for Freedom of the Press 489 U.S. 749 (1989), SSA discontinued the process of providing

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such data. The enactment of section 311 of the Social Security Independence and
Program Improvements Act of 1994 restored the legal authority for SSA to release vital
status data except for death data obtained from a state under the auspices of section 205
(r) of the Social Security Act. A companion change to the Internal Revenue Code
(26 U.S.C. § 6103) permits SSA to release "presumption of living" data based on reports
of earnings obtained from the IRS. Accordingly, when the research in question has been
determined to contribute to a national health interest, SSA will furnish vital status data on
study subjects. The researcher must submit the study subject's Social Security number,
full name (first, last, and middle name), date of birth (month, day, century, and year), and
sex. SSA, in turn, will furnish one of the following vital status determinations for each study
subject:

Death information (the date of death and state where a claim was filed, or the state
of residence at the time of death) if available;
Presumption that the individual is living (there is sufficient information in SSA
administrative records to support this determination);
Status unknown (SSA has no record of death, nor sufficient information within the
SSA administrative records to support a determination that the subject is alive);
Social Security number (SSN) verification failed (the SSN and name furnished to
SSA did not match or the date of birth furnished for an SSN/name did not match the
information in the SSA administrative records); or
The SSN was impossible or had never been issued.

Privacy Act Statement for Epidemiological Research Requests
See Revised Privacy Act Statement Attached
The information requested by this application is authorized by the Privacy Act of 1974
(5 U.S.C. 552a), section 1106 of the Social Security Act (42 U.S.C. 1306), and regulations
under title 20 C.F.R. 401.165. SSA will use the information you provide to document your
request for vital status data, to evaluate whether you meet the criteria required for receipt
of the data, and to bill you for the required payments. Information requested in this format
is voluntary. However, if you do not provide the required information, we will be unable to
process your request. While the information you furnish in this format would almost never
be used for any purpose other than processing your request for epidemiological vital
status data, such information may be disclosed by SSA to facilitate statistical research and
audit activities necessary to ensure the integrity and improvement of programs
administered by SSA.

See Revised PRA Attached
Paperwork Reduction Act (PRA) Statement and OMB Control Number
This information collection meets the requirements of 44 U.S.C. 3507, as amended by
section 2 of the Paperwork Reduction Act of 1995. You do not need to answer these
questions unless we display a valid Office of Management and Budget control number. We
estimate that it will take about 120 minutes to read the instructions, gather the facts, and
answer the questions. You may send comments on our time estimate above to:
SSA
Room 1338 Annex Building
Baltimore, MD 21235-0001

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Application Process
For each request for services, you must cover the following specific areas in separately
numbered paragraphs:
1. Project or study title.
2. Applicant name, full address, phone number, fax number, and e-mail address.
3. Contact individual name (if different than applicant), full address, phone number, fax
number, and e-mail address.
4. Project coordinator name, full address, phone number, fax number, and e-mail
address.
5.
a. Name of sponsoring organization or institution supporting the research.
b. Name (and title, if available) of specific person who will sign the agreement and
reimburse SSA for expenses incurred in supplying data.
c. Employer identification number (Social Security number if not a business).
6. Data custodian's name, full address, phone number, fax number, and e-mail
address.
7. Attach a one-page summary of the study protocol of the project activities. Include
specific purposes(s) of the research to be undertaken and the outcomes expected.
8. Estimated number of records you will submit. To protect data from theft or
modification, SSA recommends that requestors encrypt all input files prior to
submission. Submitting unencrypted data to SSA is not recommended and is done at
the requestor's own risk.
9. Fully explain how the data provided by SSA will be used. Specify whether the data
will be used only to determine the subjects' vital status or whether it will also be used
to obtain death certificates to determine the causes of death or to obtain additional
information from next-of-kin, physicians, or hospitals.
10. Provide the final disposition of SSA data to include the location of files and full
disclosure of who will have access to the identifying data on the "presumed living"
and for how long. In addition to the staff of the requesting organization, list any "other
party" that will receive (or have contractual or other rights to) any identifying vital
status information provided by SSA on the "presumed living." Note that all
organizations that will receive identifying information on the "presumed living" must
become a party to the agreement. All individuals accessing such data must sign a
confidentiality agreement.
11. If applicable, fully explain how the applicant plans to publish or release the research
results, including whether any supporting documentation will be made available in
identifiable form on the "presumed living."
12. Provide a data protection plan describing how you will ensure the confidentiality of
the vital status data supplied by SSA on the "presumed living."
13. Include a statement that the above applicant fully understands that the vital status
data obtained from SSA on the "presumed living" will only be used for the purposes
described in this request and will not be used for administrative or legal purposes.
14. Include a statement that the applicant hereby agrees to ensure the confidentiality of
the vital statistics supplied by SSA on the "presumed living" as described in the data
protection plan (item 12).
15. Applicant's signature.

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NOTE: If the applicant indicates that other organizations or individuals will receive
identifying SSA vital status data on the "presumed living," that organization must also be a
party (signatory) to the applicant's memorandum or must submit a separate supporting
memorandum. In this supporting documentation, each third party must indicate (1) their
role in the study and the activities they will perform, (2) a data protection plan describing
how they will store the identifying data on the "presumed living" and maintain the
confidentiality of such data, and (3) how and when the identifying data on the "presumed
living" will be destroyed.
An evaluation team comprising staff members from SSA's Office of Research, Evaluation,
and Statistics and the National Center for Health Statistics (NCHS) will review each
application for services. The team will not attempt to determine the scientific merit of the
study. It is understood that the merit of the study has been (or will be) determined by the
sponsoring agency and/or the organization performing the study. The team's purpose will
be to reach a consensus that the results of the study could be expected to advance the
public's knowledge in a health area of importance to a segment of the United States
population.
If such a determination is made and the Associate Commissioner for Research,
Evaluation, and Statistics concurs, the applicant will be notified, in writing, of the methods
that may be used to submit data on study subjects, the exact format to be used in
submitting this data, and the cost for developing and transmitting the vital status data from
SSA records. The applicant will be required to sign a memorandum of understanding that
will delineate his or her responsibilities in the use of the requested vital status data. The
applicant will also be required to sign a contractual agreement to facilitate payment for the
service.
The Social Security Administration will recoup all costs (computer program development
costs and ongoing processing costs) associated with this service. The service is currently
available (for fiscal year 2008) at a cost of $0.21175 per record (data supplied to identify
one study subject) up to 25,000 records. Additional records will be processed at a cost of
$0.03905 per record. These rates are subject to change to reflect actual costs in
subsequent years. Form SSA-1234-U5 "Agreement Covering Reimbursable Services" will
be signed by the applicant and an appropriate SSA representative to formalize the
payment process. Nonfederal requesters are required to provide an advance payment of
100 percent of the SSA costs for this service.
Criteria Used to Approve Requests
The SSA/NCHS team will use the following criteria in formulating their recommendations
for the Associate Commissioner for Research, Evaluation, and Statistics:

Use of Data for Statistical Purposes. The request for services should clearly state
that the vital status data supplied will be used to support statistical calculations
and/or study findings. Furthermore, the request must indicate those situations in
which the death data furnished will be used to identify state death records. A request
will be disapproved if it proposes to use the vital status data or state death data
obtained from the vital status data for administrative, law enforcement, or other
nonstatistical purposes. The team can suggest that the applicant be given the

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opportunity to revise the application to eliminate any nonstatistical uses of the vital
status data.

Disease Registries. Requests from individuals and or groups working with disease
registries will be accepted. By "disease registry" is meant a roster of persons
diagnosed and/or treated for a particular disease and maintained for the purpose of
morbidity and/or mortality surveillance without any specific hypotheses to be
examined. Registries usually employ a standardized methodology, are subject to
informal and sometimes formal controls, and may rely on other methods for follow-up
of a majority of the roster. Such registries deserve special considerations. Applicants
who propose to submit a roster of names deriving from such a registry should specify
the date the registry was founded, the purposes of the registry, the eligibility criteria
for including persons in the registry, the provisions for internal and external approval
of the registry's quality and methods (including human subject considerations), and
the dates of the last documented internal and/or external reviews.
SSA will generally approve these submissions provided the requests give adequate
documentation of the registries' activities.
Furthermore, registries will not be required to submit separate applications for each
study. Multiple uses of SSA vital status data are permitted provided that (1) each
study is solely for statistical purposes in medical and health research, (2) adequate
assurances are given that the confidentiality of the identifying vital status data on the
"presumed living" will be maintained, and (3) vital status data on the "presumed
living" will be kept separate from any administrative records.

Mortality Follow-up on Non-Disease Cohorts. Most applicants are required to
submit separate requests for specific studies. However, some organizations conduct
mortality surveillance studies on "non-disease" cohorts such as industrial workers,
population samples, and members of particular families, and the vital status data on
those individuals may be used for multiple epidemiological studies. Such
organizations, in essence, are maintaining exposure or other non-disease "registries"
that facilitate epidemiological studies of groups with particular experiences. Such
organizations will not be required to submit separate applications to SSA for each
study, although they will be required to describe expected protocols and give
specific, current, or future examples.
Multiple uses of vital status data obtained from SSA on the "presumed living" are
permitted provided that (1) each study is solely for statistical purposes in medical or
health research, (2) adequate assurances are given that the confidentiality of the
identifying vital status data on the "presumed living" will be maintained, and (3) vital
status data on the "presumed living" will be kept separate from any administrative
records.

Use of Data by a Third Party. If the applicant indicates that another organization
will receive identifying SSA vital status data on the "presumed living," that
organization must be a party to the original submittal or submit a supporting
memorandum. In this supporting documentation the third party must indicate (1) their
role in the study and the activities they will perform, (2) a data protection plan
describing how they will store data and maintain the confidentiality of data on the

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"presumed living," and (3) how and when data on the "presumed living" will be
destroyed.

Final Disposition of Data. The applicant must indicate if, how, and when identifiable
data on the "presumed living" furnished in support of a request will be destroyed. If
there is no indication that the identifiable data on the "presumed living" will be
destroyed, the individual requesting the vital status data must explain, in some detail,
why the data need to be maintained.

Repeated Use of the Service
Once an applicant is approved to obtain vital status data for a specific study or project, the
approval is valid for 2 years as long as there are no major changes in the project.
Additional records may be submitted under the approved contract for services. If, however,
the project specifications change, the applicant must submit a new request for services.
The following is a list of possible occurrences that would require the submission of a new
request for services:

The project will be supported by a new organization;
A new organization will be receiving vital status data;
Confidentiality provisions on the "presumed living" have changed;
Provisions for disposing of data on the "presumed living" obtained from this request
have changed;
Vital status data on the "presumed living" will be used for legal, administrative, or
other actions that could directly affect particular living individuals or establishments;
or
Changes have been made in the project's research objectives.

Guidance for Preparing a Data Protection Plan
As a potential user of SSA sensitive data, you must submit an SSA Data Protection Plan
for approval. You must specify in your SSA Data Protection Plan how you will keep SSA
data on the "presumed living" secure and confidential on a variety of media, including
magnetic tapes, hard disks, and other fixed magneto-optical media; compact disks,
diskettes, and other removable magneto-optical media; and paper. Use the following
Guidance for Preparing an SSA Data Protection Plan to write your SSA Data Protection
Plan. Describe in detail each provision listed.
The safeguards shall provide a level and scope of security that is not less than the level
and scope of security established by the Office of Management and Budget (OMB) in
OMB Circular No. A-130, Appendix III - Security of Federal Automated Information
Systems (http://www.whitehouse.gov/omb/circulars/a130/a130.html) which sets forth
guidelines for security plans for automated information systems in federal agencies.
SSA sensitive data includes any data in identifiable form from SSA's administrative
records about the "presumed living."
Your SSA Data Protection Plan must cover the following areas:

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1. Security/Physical Safeguards of the Computing Environment
We strongly recommend that you use a self-contained Local Area Network (LAN) or a
stand-alone computer(s) because of the potential security problems that can occur in
timesharing mainframes or LANs. If you do use a timesharing platform, be very specific in
describing the security and safeguards that you will use to protect our data.
Provide a detailed description of the security/physical safeguards of the computing
environment in which you will be managing and analyzing the data. For each item of the
computing equipment you will be using (CPU, tape drives, printers, and so on), describe:
a. Where they are located;
b. Who has physical access to them;
c. The security provisions that restrict access to only authorized users of the data on
the system(s) you will be using, such as locked doors, locks on equipment,
passwords, encryption, and so on;
d. The routine procedures for making backup copies of data files on tape or disk;
e. The system as a whole as well as your terminal;
f. The access system administrators have to files and passwords [for shared file
systems only]; and
g. The audit trails that you maintain to identify users, authenticate users, and trace
users' actions on your system. This enables you to maintain individual accountability
of all data users.
2. Restricted Access—Fixed Storage Media
Provide a detailed description of how you will restrict access (for example, password
protection) to hard disk or other electromagnetic, optical, or similar fixed storage device
files containing the data. Indicate the kind of storage data you will be using and describe:
a. Where the storage devices to be used are physically located;
b. How you will restrict physical access to only authorized persons;
c. How you will restrict access to the contents of hard disk and similar storage device
files to only authorized persons, such as through a system of encryption and/or
passwords;
d. How you will restrict access to files to which only authorized users have "read" and
"write" permission;
e. How you will prevent routine system backups of hard disk and similar storage device
files, regardless of type of backup medium;
f. How you will prevent access to files by system administrators [for shared file
systems only];
g. Clearly state in your plan that no more than one backup copy will be made of any
hard disk or similar storage device file containing the data; and
h. When (on or before the date on which your authorized access to the data expires)
and how all such copies will be destroyed.
3. Restricted Access—Removable Storage Media

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Provide a detailed description of how you will restrict access to compact disks, diskettes,
and other removable electromagnetic or optical storage media files. We strongly
recommend against the use of removable media for data storage, except as a means of
shipping data to and from SSA. If used, describe:
a. How you will use removable media data storage;
b. Where the removable media to be used will be physically located;
c. How physical access to them is to be restricted to only authorized persons, including
provisions for storage in locked cabinets when not in use;
d. Which mechanisms will be used to ensure that only authorized persons will be able
to mount and read removable media; and
e. Which mechanisms (for example, computing systems that require the use of
keywords or labels known only to the owner of the removable medium, to mount the
medium) will be used to ensure that only authorized persons will be able to mount
and read removable media handled by a central system [for shared file systems
only].
4. Printed Output
Provide a detailed description of how you will restrict access to paper printouts containing
SSA data. SSA strongly recommends against the creation of any paper printouts of its
data. If used, describe:
a. The uses that will be made of such printouts;
b. The reasons why no other media can be used for the same purpose;
c. The means by which you will ensure that such printouts are handled by authorized
persons only;
d. How they will be kept in locked storage, accessible only to authorized persons when
not in use;
e. How they will be kept from the vision and reach of unauthorized persons when they
are in use; and
f. How they will be destroyed (for example, made unreadable through burning or
shredding) after completing any analysis.
5. Derivations of SSA Data
Provide a clear and detailed statement that you will treat all derived SSA data in the same
manner as the original SSA data, and that you understand that derived SSA data includes
but is not limited to:

Subsets of cases or variables from the original data;
Numerical or other transformations of one or more variables from the original data,
including sums, means, logarithms, or products of formulas; or
Variables linked to another data set using variables from the original data as linkage
variables.

NOTE: Aggregated statistical summaries and analyses of the original data, such as tables
and regression formulas, are not "derived variables" and, unless otherwise specified in the
Memorandum of Agreement (MOA), are not subject to the requirements of your plan.

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6. Linkages to Other Data
Provide a clear and detailed statement that you will not link any other data to the original
data specified in the MOA. Your statement must also include recognition that you will not
link the original data or derived data set(s) to any other SSA data set(s) without our explicit
written permission.
7. Training for Individuals Who Will Have Access to Confidential Data
All individuals who will have access to SSA data in identifiable form must understand the
security and safeguard provisions required to ensure the confidentiality of SSA data.
Explain how you will train these individuals so they are familiar with the safeguarding
provisions in your SSA Data Protection Plan. In addition, they will be required to sign a
Confidentiality Agreement.

Explanatory Notes
Authorized Persons
Authorized persons include the Custodian(s), the Principal Investigator(s), and any
other persons or data users designated in the Memorandum of Agreement.
SSA Sensitive Data
SSA sensitive data contain identifiable personal information and information meant
to be kept confidential as covered under SSA Regulation No. 1, the Privacy Act of
1974, the Tax Reform Act of 1976, and Section 1106 of the Social Security Act of
1974.
Encrypted SSA Data
Where encryption is needed, encrypt SSA data using the Digital Encryption
Standard, the only data encryption standard approved by the National Institute of
Standards and Technology (NIST) for use by federal agencies at this time.
Faxing SSA Data
We prefer that you not fax SSA data. However, if you do fax SSA data, documents
must be properly labeled, the fax telephone number must be verified, and an
authorized person must be at the fax machine prior to sending the document.
E-mailing SSA Data
We prefer that you not e-mail SSA data. However, if you do e-mail SSA data, it must
be encrypted as an attachment to the mail message and sent to an authorized
person only.

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Protected Communications
We prefer that you not electronically transmit SSA data. However, if you do
electronically transmit SSA data over external networks, dedicated lines must be
used or the data must be encrypted and an authorized person must be at the
receiving end prior to the transmission.
Acceptable Delivery of SSA Data
You must deliver SSA data only to authorized personnel and by delivery services
that provide tracing services such as certified mail, priority mail, or Federal Express.
All packages must be properly sealed, labeled and reinforced, and enclosed with a
list of the contents being sent.
Destruction of SSA Data
All SSA data not returned must be destroyed by the end of the project date as
described in the MOA. SSA data can be destroyed by burning or shredding. If the
data are burned, use EPA-approved public incinerators to burn it and examine ash
residue and re-burn if any large pieces are not totally destroyed the first time. If the
data are shredded, use shredders that reduce residue particle size to 3/16 of an inch
or less in width.
Clearing Magnetic Media
Magnetic media (tapes, disks, hard drives) containing SSA data must be destroyed
or erased prior to reuse. To erase, overwrite SSA data a minimum of three times with
a commercial disk utility program. If you are unable to overwrite, degauss using a
commercial degausser.
Proper Labeling
All stored or transferred SSA data, electronic or nonelectronic, must be labeled
"DISCLOSURE PROHIBITED—THIS CONTAINS SENSITIVE INFORMATION—
SSA RESTRICTED DATA."

Confidentiality Agreement
All individuals who will have access to SSA data on the "presumed living" in identifiable
form must sign and date the Confidentiality Agreement.
Step 6

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Confidentiality Agreement

Purpose: This form is for all users of SSA sensitive data to certify that they
understand SSA’s security, confidentiality and ethics requirements.
I understand the SSA security, confidentiality, and ethics requirements and agree
that:
1. I will comply with all the confidentiality and legal requirements as stated in the
contract, Memorandum of Agreement (MOA), or other documentation when using
SSA sensitive data.
2. I will follow all security and safeguard provisions as described in the SSA Data
Protection Plan when using SSA sensitive data.
3. I agree not to construct and maintain, for a period of time longer than stated in
the contract, MOA, or other documentation, any file containing SSA sensitive
data unless explicitly agreed to by SSA in writing.
4. I agree not to link any other data to the SSA sensitive data described in the
contract, MOA, or other documentation or any derived data set(s) unless
explicitly agreed to by SSA in writing.
5. I will use proprietary software, that is, computer software that complies with
federal copyright laws and licensing agreements.
6. I agree to keep confidential any third-party proprietary information that may be
entrusted to me as part of the contract, MOA, or other documentation.
7. I will not release or disclose any information subject to the Privacy Act of 1974,
section 6103 of the Internal Revenue Code, SSA Regulation 1 (20 C.F.R. Part
401), and section 1106 of the Social Security Act to any unauthorized person.
8. I understand that I may be subject to a site inspection(s) by SSA to ensure that
adequate security safeguards, controls, and confidentiality are maintained as
specified in the SSA data protection plan and in the contract, MOA, or other
documentation.
9. I understand that disclosure of any information to parties not authorized by SSA
may lead to civil or criminal prosecution under federal law and/or regulations.
10. I understand that I can be subject to a personnel security and suitability
background investigation.

_____________________________________
User signature

__________________
Date

SSA will insert the following revised Privacy Act and Paperwork Reduction Act
Statements into the Internet screens upon OMB approval:
Privacy Act Statement
Epidemiological Research Request
Section 1106 of the Social Security Act, as amended, authorizes us to collect this
information. The information you provide on this form is used to document your request
for vital status data, and evaluate whether you meet the criteria required for receipt of the
data, and to bill you for the required payments. Your response is voluntary. However,
failure to provide all or part of the requested information may affect the processing of
your request.
We rarely use the information provided on this form for any purpose other than for the
reasons explained above. However, we may use it for the administration and integrity of
Social Security programs. We may also disclose information for the following:
1. To process your request for epidemiological vital status data;
2. To facilitate statistical research, audit, and investigative activities necessary to
ensure the integrity and improvement of Social Security programs.
Additional information regarding this form, our systems, and our programs, are available
on-line at www.socialsecurity.gov.

Paperwork Reduction Act Statement
This information collection meets the requirements of 44 U.S.C. § 3507, as amended by
section 2 of the Paperwork Reduction Act of 1995. You do not need to answer these
questions unless we display a valid Office of Management and Budget control number.
We estimate that it will take about 120 minutes to read the instructions, gather the facts,
and answer the questions. Send only comments relating to our time estimate above to:
SSA, 6401 Security Blvd, Baltimore, MD 21235-6401.