National Death Index Application Form

[NCHS] Application Form and Related Forms for the Operation of the National Death Index

Att C National Death Index Application Form

OMB: 0920-0215

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NDIAPPoSP Screenshots of Application Form
This document is meant to present all the forms a user (applicant) will see when filling out their
application.
Several Items may have a “show/hide” effect, meaning a checkbox or an answer to another item may
show or hide some other item. In that case, we will screenshot the hidden version and the show version.
Some pages are too long to easily display in this document, so they may be cut in pieces to display.

Page 1 of 12

NDIAPPoSP Screenshots of Application Form
This is initial appearance – As NDIAPPoSP administrator – I see all tabs, but a normal applicant would not
see the “Staff”, “Adviser”, or “Director” tabs. These are specific to Staff and administrators. The initial
screen does not have the “Pre-existing Application” checked.
Pre-existing Application # Hidden:

Page 2 of 12

NDIAPPoSP Screenshots of Application Form
Pre-existing Application # Visible:

This field is a remnant from using a paper-based solution. IT allows applicants to keep their original
application numbers.

Page 3 of 12

NDIAPPoSP Screenshots of Application Form
This is the page for Title and contact information for the Primary Investigator or Project Director.

This next tab (labelled “Page 2) pertains to Funding Sources, Data Sources, and who will receive the
data. There are two forms of this tab – one is for Item #3 and Item #5 to have “No” selected. It would
only require information for Data Sources:

Page 4 of 12

NDIAPPoSP Screenshots of Application Form
If #3 and #5 are “Yes” then there is repeatable text boxes for the applicant to fill in:

Page 5 of 12

NDIAPPoSP Screenshots of Application Form
The next tab is “Page 3” and focuses on Summary of the study protocol:

The “Yes/No” options do not affect the screen.

Page 6 of 12

NDIAPPoSP Screenshots of Application Form
The tab labelled “Page 4” deal with death record follow-back information. If 7a is answers “No” then
there is nothing more needed for that tab:

If “Yes”, more information is needed about the follow-back investigation:

Page 7 of 12

NDIAPPoSP Screenshots of Application Form
The tab labelled “Page 5” is a long tab. Item 8 and 9 focus on the IRB, organizations submitting &
receiving data, and what physical, technical, & administrative controls will be place on the data to
ensued confidentiality: It is broken into two screenshots for readability:

Page 8 of 12

NDIAPPoSP Screenshots of Application Form
Tab labelled “Page 5” continued:

Page 9 of 12

NDIAPPoSP Screenshots of Application Form
The tab labeled “Page 6” focuses on Completion of study or project and how the data will be disposed:

Depending on answer to 10a and 10c, there may be more fields to enter:

Page 10 of 12

NDIAPPoSP Screenshots of Application Form
The final tab labelled “Page 7” allows the applicant to upload documents supporting any of the items on
the previous tabs. Additionally, this is the tab that contains fillable PDF forms that they can fill out and
upload to this page.

As previously stated, the other tabs are not available to the applicant. Depending on SharePoint Group,
these other tabs will not appear. I am in the Admin Group, so I see all the tabs.

Page 11 of 12

NDIAPPoSP Screenshots of Application Form
On all the tabs, there is a “Notes” footer that contains reference to Identifying or Identifiable Death
Record Information. By click it, the applicant is given what that definition means in a pop-up.

That conclude all the tabs that applicants see.

Page 12 of 12

Attachment A
National Death Index (NDI) Data Disposition Form

Use the multipurpose form on the next page to notify the NDI program of one of the following
events:
• When you have disposed of ALL the identifying or identifiable death record information
obtained from the NDI.
• If your initial NDI Application was submitted more than 5 years ago and you are now
submitting an NDI Repeat Request Form (and have never completed this form).
• To request an extension for the retention of your identifying or identifiable death record
information beyond 5 years from when your initial NDI Application was submitted.
• If you have already been approved for a 1 to 5 year extension, to request another extension
beyond your previously approved extension period.

Some State Vital Statistics Offices have expressed concern about indefinite retention of “identifying or
identifiable death record data” that could be used in the future by other persons for other purposes.
Definition of “IDENTIFYING or IDENTIFIABLE death record information”—Any information on
death certificates, other paper documents, or in computer files that by itself, or if linked with
other records, would permit the identification of one or more individuals or establishments;
for example, name(s), Social Security number, exact dates, addresses, and death certificate
number. Even with the removal of direct identifiers and linkable study subject identification
numbers, there is still a special concern that some combinations of the remaining variables
could potentially be used to identify an individual. For example, a combination of date of birth,
date of death, and/or cause of death is considered identifiable.
Except for data stored in registries, or other approved long-term studies, all identifying
or identifiable data received from NDI must be removed from all research records at the
conclusion of the study or within 5 years after receipt of the NDI data—regardless of the
data set in which the data are kept. This means that all identifiers or potentially identifiable
data elements associated with cause-of-death codes must be removed from all analysis files
unless there is no way to identify an individual decedent. This also means that any linked files
(with crosswalks) must be destroyed. As long as there are no identifiers or linkage variables
remaining in the analytic or public-use file(s), cause(s) of death codes may remain in such
file(s). Files including backup and derived files with NDI identifying or identifiable data must
be both deleted and overwritten to prevent recovery of the data. The requirements above also
apply to all data derived from NDI data.
Please note: Death certificates obtained directly from state offices may have to be shredded in
less than 5 years depending on each state’s requirements.

Attachment A
NDI Data Disposition Form (continued)

Date request approved:

NDI Application number:

Title of study or project:
Principal Investigator or
Project Director:
Title:
Organization:
Mailing address:
Phone number:

E-mail:

1. As the Data Custodian for the above listed study/project, I affirm that all electronic
and paper files containing identifiable NDI data have been destroyed on:
(If not destroyed, put NA and answer items 3–5 below.)
2. I also affirm that all derivative and back-up copies have been destroyed on:
(If not destroyed yet, put NA and answer items 3–5 below.)
3. When will the identifiable death record information be destroyed?
(State UNKNOWN if this is an open-ended or ongoing study that has no specific
disposition plan at this time.)
4. If the answer to item 3 is: (1) unknown, (2) more than 5 years after you submitted your NDI Application Form,
or (3) more than 5 years after you last requested an extension for the retention of your data, please provide a
strong justification for why the data need to be retained beyond the 5-year period.

5. If it has been more than 5 years since your initial NDI Application (or since your
last request for an extension), are you requesting an extension for the retention of
identifiable NDI data?

Yes

6. If your extension is approved, you are responsible for submitting this form when
your data have been destroyed OR within 5 years from now but no later than the
date you indicate in the box to the right.

Data Steward (print name and title)

Signature

Date

Principal Investigator or Project
Director (print name and title)

Signature

Date

Email form to: [email protected]

Attachment B

Registries and Long-term Use and Indefinite End Date Studies: Additional
Information Required for NDI Application Form
In addition to the information requested of all NDI applicants, the NDI Application Form must also
include the following information in item 6 of the Application:
1. Provide brief descriptions of examples of specific studies that are now being performed or planned.
After describing such studies, the applicant should state the following: Should there be any
significant deviations from such studies, we fully understand that an amended NDI Application
must first be submitted to and approved by NCHS.”
(The purpose of the above requirements is to provide evidence that the organization in fact will be
using the registry mortality database solely for “statistical purposes in medical and health studies.”)
2. If the applicant indicates that no death record follow-back investigations will be implemented, the
applicant must make the following statement:
“Should follow-back investigations become necessary, and involve death records obtained via the
NDI, it is understood that first we must (1) submit an amended Application Form describing the
follow-back investigations, (2) obtain and submit an approval from an Institutional Review Board for
the Protection of Human Subjects, and (3) wait for the amended application to be reviewed by the
NDI advisers and approved by the NCHS Director.
3. Provide a specific statement that all hard-copy death record information obtained via the NDI,
including copies of death certificates, will be flagged and stored separately from any administrative
records or from statistical records that could be used in the future for purposes not described in the
application. Computer records containing death record information obtained via the NDI shall also
be flagged so that they will not be used in the future for purposes not described in the application.

Attachment C

National Death Index (NDI) Requirements for Approval by an Institutional Review
Board (IRB) for the Protection of Human Subjects
General NDI Requirements for IRB Approvals:
1. The IRB determination needs to be made by (a) an institution that has a Multiple Project Assurance
(MPA) or a Federal Wide Assurance (FWA) approved by the Department of Health and Human
Services (DHHS) or (b) by an independent IRB registered with DHHS.
2. If the NDI applicant’s institution has an IRB (or its equivalent) that is not approved by DHHS, the
applicant must submit additional documentation describing the IRB and listing how its membership
is constituted.
3. All applicants must submit a current IRB determination letter (official federal medical and health
surveillance projects are exempt).
4. The review and approval by an IRB must occur before the approval of the NDI Application.
Specific NDI Requirements for Studies Involving Death Record Follow-back Investigations:
1. The applicant must obtain a letter from the IRB indicating specifically that the study’s death record
follow-back methodology has been reviewed and approved and that the review of the study also
included an assessment of any potential emotional harm and undue respondent burden that may
be caused by the proposed follow-back activities. (Of concern are any contacts made to nextof-kin, physicians, hospitals, or other establishments based on information appearing on death
certificates obtained via use of the NDI.)
2. The letter must include language similar to the following statement (but tailored specifically to the
study that was reviewed):
“We have reviewed this study in conjunction with your application to use the NDI. We are
satisfied that the procedure to be used to obtain additional information on deceased study
subjects (from next-of-kin, physicians, hospitals, and/or others) provides appropriate protection
to the respondents with respect to minimizing respondent burden, maintaining confidentiality,
protecting their privacy, and avoiding or minimizing any emotional or other harm that may affect
the respondent. Our review included an assessment of all existing and/or proposed contact
letters, telephone techniques, questionnaires, and consent forms used in the death record
follow-back investigations. These were all deemed to be satisfactory.”
3. If the applicant is unable to obtain such a letter from the IRB, the study’s IRB approval document
must include attachments that clearly show that the IRB’s review included the death record
follow-back methodology.

Attachment C (continued)
Rationale:
It is understood that most studies using the NDI do not involve diagnostic, therapeutic, or any other
forms of physical contacts with human subjects and consequently do not receive or need to receive
IRB approvals based on requirements set forth by their own institution or by the regulations for the
protection of human subjects from DHHS. On the other hand, NCHS and many State Vital Statistics
Offices are concerned about the invasion of privacy, potential emotional harm, and undue respondent
burden that can result (from contacts made to next-of-kin, physicians, hospitals, and others) as part
of death record follow-back investigations that are felt to be essential components of some studies.
Because of this concern, an IRB should review the follow-back methodology to be used in such
studies, including review of all contact letters and/or telephone techniques, questionnaires, and
consent forms (for release of medical records), as well as procedures for ensuring that the information
obtained remains confidential. Therefore, IRB approvals have been made a prerequisite for NDI
approvals for studies involving death record follow-back investigations.
NDI applicants or IRB committees requiring additional information on the above requirements should
contact NDI staff at 1–301–458–4444.

Attachment D
CDC accepts digital signatures from any federal agency that employs a PIV or CAC card under the
“interoperability requirement” of HSPD-12, as long as revocation information is available from that PIV
or CAC card at the time we receive the form.
For persons who do not have a U.S. government-issued PIV or CAC card, CDC currently has no way
of verifying that the signatures are authentic. As technology changes, this may become an option in
the future.

CS321320
01/2021

National Death Index Confidentiality Agreement
Study or Project Title:

The undersigned hereby agrees to the following terms and conditions associated with this National Death Index (NDI) Application
and to the use of the information obtained from: (1) the NDI, (2) state death records, and (3) death record follow-back investigations:
A.

Except for persons or organizations specified in the approved NDI Application Form, no data will be published or released
in identifiable form to any party. ALL REQUESTS FOR IDENTIFIABLE DATA OBTAINED VIA THE NDI WILL BE
REFERRED IMMEDIATELY TO NDI STAFF. In accordance with Section 308(d) of the Public Health Service Act, such
identifiable data will specifically not be provided in response to a direct order from an official of any government agency, the
Administration, or Congress, nor in response to an order from a court of justice.

The identifying information will be used ONLY for statistical purposes in medical and health studies.

The identifying information will not be used as a basis for legal, administrative, or other actions that may directly affect those
particular individuals or establishments as a result of their specific identification in this project.

The identifying information will be used only for the study or project proposed and the purpose described in the approved NDI
Application Form. Use of the information for a research project other than the one described in the application form will not be
undertaken until after a separate NDI Application Form for that project has been submitted to and approved by the NDI.

The National Center for Health Statistics (NCHS) obtains death record information via contracts with the state vital statistics
offices. These contracts contain specific restrictions on the use of the information by the NDI and by the NDI Plus service
(which gives NDI users cause-of-death codes). By providing NCHS with these assurances, I understand that I am also
providing the same assurances to the State Vital Statistics Offices. Violation of the terms and conditions of this Agreement
may subject the organization/researcher to immediate abrogation of the Agreement by NCHS, the required return of all NDI
data and related materials, and denial of future use of the NDI. Violation of the terms of the Agreement may also be a violation
of federal criminal law under 18 U.S.C. Section 1001. In the event of unauthorized disclosure of identifiable information
from NDI data, NCHS will pursue all legal remedies. Violations of the terms of the Agreement are also subject to state legal
remedies.

The original version of the NDI data must be retained at a single location and no copy or extract of identifiable information
may be made available to anyone except those persons identified in the NDI Application and those who have signed the NDI
confidentiality agreements. The NDI data may not be re-released to others except as specified in item 5 of the NDI Application.

Access to identifiable NDI data maintained in computer memory must be controlled by password protection. Servers housing
NDI data must be protected by a firewall and must not be directly accessible from the Internet. All persons must have
completed required computer security training required by their institution. All printouts, diskettes, personal computers
with data on hard disks, or other physical products containing identifiable information derived from the NDI must be kept
in locked cabinets, file drawers, or other secure locations when not in use. Security procedures must be in place to ensure that
identifiable NDI data cannot be used or taken by unauthorized individuals. Printouts, tabulations, reports, and other materials
must be edited for any possible disclosures of NDI identifiable data before making the information available to anyone other
than the persons identified in this Agreement.

Except for data stored in registries, or other approved long-term studies, all identifying or identifiable data received from NDI
must be removed from all research records at the conclusion of the study or within 5 years after receipt of the NDI data—
regardless of the data set in which the data are kept. This means that all identifiers or potentially identifiable data elements
associated with cause-of-death codes must be removed from all analysis files unless there is no way to identify an individual
decedent. This also means that any linked files (with crosswalks) must be destroyed. As long as there are no identifiers or
linkage variables remaining in the analytic or public-use file(s), cause(s) of death codes may remain in such file(s). Files
including backup and derived files with NDI identifying or identifiable data must be both deleted and overwritten to prevent
recovery of the data. The requirements above also apply to all data derived from NDI data. Note: Death certificates obtained
directly from state offices may have to be shredded in less than 5 years depending on each state’s requirements. See
Attachment A.

The organization/researcher agrees to report any confirmed or suspected losses, including theft and unauthorized
disclosure/ access, of personally identifiable information (PII) from the NCHS data file(s) to the CDC Computer Security
Incident Response Team’s (CSIRT) 24x7 Emergency Number (1–866–655–2245) within 1 hour. After notifying CSIRT, the
organization/researcher will notify Steven Schwartz (1–301–458–4210) of the NCHS Division of Vital Statistics with the
incident number issued by CDC CSIRT. The organization/researcher will not communicate PII details via email.

NDI Confidentiality Agreement (continued)
J.

Authorized NDI staff or agents may, upon request, be granted access to
confidential NDI data are kept or used, for the purpose of inspecting the data security arrangements.

I understand that while State Vital Statistics Offices may receive copies of this application, states may require additional
information and/or assurances before responding to requests for copies of death certificates or for death record information.
Some states may not be able to honor certain requests because of the proposed uses of the state data. Furthermore, after data
from a particular state are received, I understand that users of the data are subject to that state’s laws and regulations relating to
disclosure of information on individuals or establishments.

I have reviewed this NDI Application. All the statements made in this application and in any confidentiality assurances
related to this application are true, complete, and correct to the best of my knowledge and belief. My signature below indicates
my agreement to comply with the stated statutorily based requirements with the knowledge that deliberately making a false
statement in any matter within the jurisdiction of any department or agency of the federal government violates 18 USC 1001
and is punishable by a fine of up to $10,000 or up to 5 years in prison.
The Data Steward for this project is:

facilities, where

Title:

Name

Organization:
Work phone number:

E-mail address:

As Data Steward, I affirm that I will act as the custodian of the NDI files and will be responsible for the observance of
conditions of use.
I will notify the NDI Director, Dr. Lillian Ingster (1–301–458–4286; [email protected]):
a. when access to the NDI data is no longer needed (see Attachment A);
b. if a change in site access is contemplated;
c. of the intent to modify the project’s purpose; or
d. if these responsibilities are to be transferred.
Signature of Data Steward:

Date:

SIGNATURE of Principal Investigator or Project
Director:

*SIGNATURE of official authorized to execute
agreements (last person to sign and date)

Signature

Date

Name (type or print)

Title

Organization

E-mail

Date

* NOTE: The “official authorized to execute agreements” will vary among organizations. Whenever possible, the NDI prefers that this official be someone at a
higher level of authority than the principal investigator or other persons responsible for the study or project; for example, a university official authorized to sign
grant proposals, a company vice president, or a government division or bureau director. By signing this agreement as the authorized official, you are declaring
that you have the authority to make the above assurances on behalf of the university, company, agency, or other organization and to bind the organization to the
terms of this agreement and you take responsibility for the confidentiality assurances of all organizations or individuals who are participating in this study.
For those individuals planning to sign digitally, please keep in mind that not all types of electronic signatures are acceptable. For further information, see
Attachment D.
CS321320
01/2021

National Death Index (NDI) Supplemental Confidentiality Agreement
A separate Supplemental Confidentiality Agreement must be completed and signed by each EXTERNAL organization (funding or
participating in this study) as listed in 5 of the NDI Application Form. The Supplemental Confidentiality Agreement(s) must then
be submitted as an attachment to the Application Form. THIS REQUIREMENT IS WAIVED ONLY FOR A FEDERAL GRANT,
AND THEN ONLY WHEN THE NDI APPLICANT (GRANTEE) CAN GIVE ASSURANCES THAT THE IDENTIFYING
INFORMATION OBTAINED DIRECTLY OR INDIRECTLY FROM THE NDI WILL UNDER NO CIRCUMSTANCES BE
PROVIDED TO THE GRANTOR.
Name and title of Principal Investigator,
Project Director, Project Officer, or other
responsible official:
Organization name and complete
mailing address:

Phone Number:
1.

E-mail :

Will this organization (or individual) receive any of the identifying or identifiable death record information obtained
from the NDI, state death records, and/or death record follow-back investigations? (By “definition of “IDENTIFYING or
IDENTIFIABLE death record information”—Any information on death certificates, other paper documents, or in computer
files that by itself, or if linked with other records, would permit the identification of one or more individuals or establishments;
for example, name(s), Social Security number, exact dates, addresses, and death certificate number. Even with the removal of
direct identifiers and linkable study subject identification numbers, there is still a special concern that some combinations of
the remaining variables could potentially be used to identify an individual. For example, a combination of date of birth, date of
death, and/or cause of death is considered identifiable.
Yes

Maybe

Does this organization (or individual) have any contractual or other rights to the identifying information referred to above?
Yes

Maybe

If you answered “No” to both questions 1 and 2, skip questions 3 and 4 and just provide the
two requested signatures below. If you answered “Yes” or “Maybe” to either questions 1 or 2,
please complete questions 3 and 4 and provide three signatures.

National Death Index (NDI) Supplemental Confidentiality Agreement (continued)
3.

In the box below, describe how your organization will store and maintain the confidentiality of the identifying or identifiable
death record information obtained from (1) the NDI, (2) state death records, and (3) death record follow-back investigations.
Definition of “IDENTIFYING or IDENTIFIABLE death record information”—Any information on death certificates, other
paper documents, or in computer files that by itself, or if linked with other records, would permit the identification of one or
more individuals or establishments; for example, name(s), Social Security number, exact dates, addresses, and death certificate
number. Even with the removal of direct identifiers and linkable study subject identification numbers, there is still a special
concern that some combinations of the remaining variables could potentially be used to identify an individual. For example, a
combination of date of birth, date of death, and/or cause of death is considered identifiable.
Describe the following controls that would be used to maintain the confidentiality of the NDI data:
•

Physical controls—limiting access to data such as building guards, identification badges, key cards, closed circuit TV, and
locked offices.

•

Technical controls—user identification, passwords, firewalls, encryption, virtual private network, intrusion detection
system, and standalone desktop use only.

•

Administrative controls—how frequently files will be backed up, where backup files will be stored, methods in place
to ensure least privilege access, methods for ensuring NDI identifying information is not co-mingled with administrative
records not part of this project, how use of NDI data will be monitored to prevent its use for purposes other than those
approved for this project, how personnel using the system will be trained and made aware of their responsibilities for
protecting the NDI information, methods for keeping track of who has access to the data, and methods for ensuring return or
destruction of data.

Note: if multiple sites are involved in the above-mentioned study project, each site must describe its own controls that would be used to maintain the confidentiality
of the NDI data

How and when will your organization dispose of identifying or identifiable death record data? If your organization has no plans
to dispose of some or all of the identifying or identifiable death record data, please explain why.

National Death Index Confidentiality Agreement
Study or Project Title:

The identifying information will be used ONLY for statistical purposes in medical and health studies.

NDI Confidentiality Agreement (continued)
J.

Authorized NDI staff or agents may, upon request, be granted access to
confidential NDI data are kept or used, for the purpose of inspecting the data security arrangements.

facilities, where

Title:

Name

Organization:
Work phone number:

E-mail address:

Date:

SIGNATURE of Principal Investigator or Project
Director:

*SIGNATURE of official authorized to execute
agreements (last person to sign and date)

Signature

Date

Name (type or print)

Title

Organization

E-mail

Date

File Type	application/pdf
Author	Hildreth, Alston C. (CDC/DDPHSS/NCHS/DVS)
File Modified	2022-10-12
File Created	2022-10-04