Privacy Impact Assessment

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Privacy Impact Assessment Form
v 1.33
Status Transition

Form Number

F-55733

Question

8/6/2013 7:33:03 AM

Answer

1

OPDIV:

CDC

2

PIA Unique Identifier:

P-9788700-526204

2a Name:

Form Date

Amyotrophic Lateral Sclerosis Web Portal
General Support System (GSS)
Major Application

3

The subject of this PIA is which of the following?

Minor Application (stand-alone)
Minor Application (child)
Electronic Information Collection
Unknown

3a

Identify the Enterprise Performance Lifecycle Phase
of the system.

Operations and Maintenance
Yes

3b Is this a FISMA-Reportable system?

4

Does the system include a Website or online
application available to and for the use of the general
public?

5

Identify the operator.

6

Point of Contact (POC):

7

Is this a new or existing system?

8

Does the system have Security Authorization (SA)?

8a Date of Security Authorization

No
Yes
No
Agency
Contractor
POC Title

Principal Investigator

POC Name

Oleg I. Muravov

POC Organization ATSDR
POC Email

[email protected]

POC Phone

770.488.3817
New
Existing
Yes
No

9/29/2010 12:00:00 AM

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9

Indicate the following reason(s) for updating this PIA.
Choose from the following options.

PIA Validation (PIA
Refresh/Annual Review)
Anonymous to NonAnonymous
New Public Access
Internal Flow or Collection

Significant System
Management Change
Alteration in Character of
Data
New Interagency Uses
Conversion

Commercial Sources

10

Describe in further detail any changes to the system
that have occurred since the last PIA.

11 Describe the purpose of the system.

General Maintenance.
-The purpose of the ALS Web Portal is to provide users with
more information regarding the disease and to facilitate
research for medical professionals and individual researchers.
The ALS Web Portal will help in completing the following:
- Collect ALS patient information as it relates to the patient’s
background information, occupational history, military history,
smoking and alcohol habits, physical characteristics and
activity, family history of disease, and the patient quality of life.
- Make available to the patients and general public educational
materials about ALS.
- Identify the incidence and prevalence of ALS in the United
States.
- Collect data important to the study of ALS.
- Promote a better understanding of ALS.
- Collect information that is important for research into the
genetic and environmental factors that cause ALS.
- Strengthen the ability of a clearing house.
- Collect and disseminate research findings on environmental,
genetic, and other causes of ALS and other motor neuron
disorders that can be confused with ALS, misdiagnosed as ALS,
and in some cases progress to ALS.
- Make available information to patients about research studies
for which they may be eligible.
- Maintain information about clinical specialists and clinical
trials on therapies.
- Enhance efforts to find treatments and a cure for ALS.

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- Collect ALS patient information as it relates to the patient’s
background information, occupational history, military history,
smoking and alcohol habits, physical characteristics and
activity, family history of disease, and the patient quality of life.
- Make available to the patients and general public educational
materials about ALS.
- Identify the incidence and prevalence of ALS in the United
States.
- Collect data important to the study of ALS.
Describe the type of information the system will
- Promote a better understanding of ALS.
collect, maintain (store), or share. (Subsequent
- Collect information that is important for research into the
12
questions will identify if this information is PII and ask genetic and environmental factors that cause ALS.
about the specific data elements.)
- Strengthen the ability of a clearing house.
- Collect and disseminate research findings on environmental,
genetic, and other causes of ALS and other motor neuron
disorders that can be confused with ALS, misdiagnosed as ALS,
and in some cases progress to ALS.
- Make available information to patients about research studies
for which they may be eligible.
- Maintain information about clinical specialists and clinical
trials on therapies.
- Enhance efforts to find treatments and a cure for ALS.

Provide an overview of the system and describe the
13 information it will collect, maintain (store), or share,
either permanently or temporarily.

14 Does the system collect, maintain, use or share PII?

The ALS Web Portal collects ALS patient information as it
relates to the patient’s background information, occupational
history, military history, smoking and alcohol habits, physical
characteristics and activity, family history of disease, and the
patient’s quality of life. The ALS Web Portal also collects
minimal identifiable information from researchers and the
general public such as name, affiliation, email and location.
Business addresses are collected in order to mail registry
brochures.
The purpose of the ALS Web Portal is to provide users with
more information regarding the disease and to facilitate
research for medical professionals and individual researchers.
Yes
No

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Indicate the type of PII that the system will collect or
15
maintain.

Social Security Number

Date of Birth

Name

Photographic Identifiers

Driver's License Number

Biometric Identifiers

Mother's Maiden Name

Vehicle Identifiers

E-Mail Address

Mailing Address

Phone Numbers

Medical Records Number

Medical Notes

Financial Account Info

Certificates

Legal Documents

Education Records

Device Identifiers

Military Status

Employment Status

Foreign Activities

Passport Number

Taxpayer ID

Yes (Race, Gender, Marital
Status, Family History,
Patient’s Quality of Life)

SSN: Last 5 digits
Birth date: Month, year

Employees
Public Citizens
16

Indicate the categories of individuals about whom PII
is collected, maintained or shared.

Business Partners/Contacts (Federal, state, local agencies)
Vendors/Suppliers/Contractors
Patients
Other

17 How many individuals' PII is in the system?

18 For what primary purpose is the PII used?

5,000-9,999
(1) The ALS Web Portal collects ALS patient information as it
relates to the patient’s background information, occupational
history, military history, smoking and alcohol habits, physical
characteristics and activity, family history of disease, and the
patient’s quality of life. The ALS Web Portal also collects
minimal identifiable information from researchers and the
general public such as name, affiliation, email and location.
Business addresses are collected in order to mail registry
brochures.
(2) The purpose of the ALS Web Portal is to provide users with
more information regarding the disease and to facilitate
research for medical professionals and individual researchers

19

Describe the secondary uses for which the PII will be
used (e.g. testing, training or research)

Research

20 Describe the function of the SSN.

The last 5 digits of the SSN will be used as a personal identifier.

20a Cite the legal authority to use the SSN.

OMB Approval Number: 0923-0041

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Comprehensive Environmental Response, Compensation, and
Identify legal authorities governing information use Liability Act of 1980" as amended by "Superfund Amendments
21
and Reauthorization Act of 1986" (42 U.S.C. 9601, 9604); and
and disclosure specific to the system and program.
the "Resource Conservation and Recovery Act of 1976" as
amended in 1984 (42 U.S.C. 6901).
22

Yes

Are records on the system retrieved by one or more
PII data elements?

No
Published:

Identify the number and title of the Privacy Act
System of Records Notice (SORN) that is being used
22a
to cover the system or identify if a SORN is being
developed.

09-19-0001

Published:
Published:
In Progress
Directly from an individual about whom the
information pertains
In-Person
Hard Copy: Mail/Fax
Email
Online
Other
Government Sources

23

Within the OPDIV
Other HHS OPDIV
State/Local/Tribal
Foreign
Other Federal Entities
Other

Identify the sources of PII in the system.

Non-Government Sources
Members of the Public
Commercial Data Broker
Public Media/Internet
Private Sector
Other
23a

Identify the OMB information collection approval
number and expiration date.

24 Is the PII shared with other organizations?

0923-0041

07/31/2014
Yes
No
Within HHS

Identify with whom the PII is shared or disclosed and
24a
for what purpose.

Other Federal
Agency/Agencies
State or Local
Agency/Agencies
Private Sector

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Describe any agreements in place that authorizes the
information sharing or disclosure (e.g. Computer
24b Matching Agreement, Memorandum of
Understanding (MOU), or Information Sharing
Agreement (ISA)).
24c

Describe the procedures for accounting for
disclosures

Describe the process in place to notify individuals
25 that their personal information will be collected. If
no prior notice is given, explain the reason.

26

Individuals are notified during the self-registration process. ALS
Patients will be notified, before creating an account, how their
data will be used in the ALS System. There will be a “Privacy
Information” link provided on the registry homepage that will
allow users to view an outline of the ALS Privacy Policy. There
will also be a standard Privacy Notice and customized Consent
Form that allows ALS patients to agree or disagree with
ATSDR’s terms. The decision of the patient is voluntary and will
determine whether or not an account is created.
Voluntary

Is the submission of PII by individuals voluntary or
mandatory?

Mandatory

Describe the method for individuals to opt-out of the
Individuals are notified during the self-registration process.
collection or use of their PII. If there is no option to
27
Users can contact ATSDR via the contact information provided
object to the information collection, provide a
on the ALS website SORN if any issues occur.
reason.
Describe the process to notify and obtain consent
from the individuals whose PII is in the system when
major changes occur to the system (e.g., disclosure
In the event of significant system changes, a modified SORN
28 and/or data uses have changed since the notice at
the time of original collection). Alternatively, describe would be published in the Federal Register.
why they cannot be notified or have their consent
obtained.
Describe the process in place to resolve an
individual's concerns when they believe their PII has
29 been inappropriately obtained, used, or disclosed, or
that the PII is inaccurate. If no process exists, explain
why not.

Individuals should contact the system owner as indicated in
the SORN, reasonably identify the record and specify the
information being contested, the corrective action sought, and
the reasons for requesting the correction, along with
supporting information to show how the record is inaccurate,
incomplete, untimely, or irrelevant.

Describe the process in place for periodic reviews of
PII contained in the system to ensure the data's
30
integrity, availability, accuracy and relevancy. If no
processes are in place, explain why not.

The system data will be reviewed annually during the Annual
Self Assessments or Recertification process. The system will be
reviewed also through the Change Management Process.
Users
Administrators

31

Identify who will have access to the PII in the system
and the reason why they require access.

To maintain data

Developers
Contractors
Others

Statistician: To analyze data

Describe the procedures in place to determine which
32 system users (administrators, developers,
Roll based access, least privilege.
contractors, etc.) may access PII.

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Describe the methods in place to allow those with
33 access to PII to only access the minimum amount of
information necessary to perform their job.

SQL read/write permissions controlled by user roles and
privileges. Active Directory controls administrator access. EAuthentication control for external users.

Identify training and awareness provided to
personnel (system owners, managers, operators,
contractors and/or program managers) using the
34
system to make them aware of their responsibilities
for protecting the information being collected and
maintained.

Annual Security and Privacy Awareness Test (SAT)

Describe training system users receive (above and
35 beyond general security and privacy awareness
training).

There is individual training available within ATSDR,
DTHHS,EHSB on an individual basis and with user manuals for
the system.

Do contracts include Federal Acquisition Regulation
36 and other appropriate clauses ensuring adherence to
privacy provisions and practices?

Describe the process and guidelines in place with
37 regard to the retention and destruction of PII. Cite
specific records retention schedules.

Describe, briefly but with specificity, how the PII will
38 be secured in the system using administrative,
technical, and physical controls.

Yes
No
Records are retained and disposed of in accordance with the
ATSDR Comprehensive Records Control Schedule (B-371).
Current procedures allow the system manager to keep the
records for 20 years unless needed for further study. Registry
records will be actively maintained as long as funding is
provided for by legislation. Retention periods vary depending
on the type of record. Source documents for computer tapes or
disks are disposed of when no longer needed in the study as
determined by the system manager, and as provided in the
signed consent form, as appropriate.
Records may be transferred to a Federal Records Center for
storage when no longer needed for evaluation or analysis.
Disposal methods include the paper recycling process, burning
or shredding hard copy records, and erasing computer tapes
and disks.
Administrative: Users are assigned unique roles and privileges
depending on their user status. ALS patients are able to create
an “ALS Patient” account, while all other public users are
required to create a “Public” account. The ALS “System
Administrator” can manage patient and public accounts and
download data. ALS Patients must also pass a validation
process before creating an ALS Patient Account. The validation
process is a series of questions that determine if a patient has
ALS. The general public can create a Public account without
going through a validation process.
Technical: PII fields will be masked on the GUI depending on
the sensitivity of the data. For example the last 5 numbers of
the SSN will be masked. All PII including SSN will be encrypted
using CDC approved methods. To encrypt/decrypt data in
database columns designed to hold PII data, a user must be
given access to open and close a symmetric key.
Physical Controls: Production and test servers are stored in a
server room secured by the CDC. Access tools are in place to
secure entry into CDC buildings (Guards, ID Badges, Key Card,
Cipher Locks, and Closed Circuit TV).

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39 Identify the publicly-available URL:

http://wwwn.cdc.gov/als
Yes

40 Does the website have a posted privacy notice?

No

40a

Is the privacy policy available in a machine-readable
format?

Yes

41

Does the website use web measurement and
customization technology?

Yes

No
No
Technologies

Yes

Web beacons

No
Yes

Web bugs
Select the type of website measurement and
41a customization technologies is in use and if it is used
to collect PII. (Select all that apply)

Collects PII?

No

Session Cookies
Persistent Cookies

Yes
No
Yes
No
Yes

Other...

No

42

Does the website have any information or pages
directed at children under the age of thirteen?

Yes

43

Does the website contain links to non- federal
government websites external to HHS?

Yes

No

No

REVIEWER QUESTIONS: The following section contains Reviewer Questions which are not to be filled out unless the user is an OPDIV
Senior Officer for Privacy.

Reviewer Questions
1

Are the questions on the PIA answered correctly, accurately, and completely?

Answer
Yes
No

Reviewer
Notes
2

Does the PIA appropriately communicate the purpose of PII in the system and is the purpose
justified by appropriate legal authorities?

Yes

Do system owners demonstrate appropriate understanding of the impact of the PII in the
system and provide sufficient oversight to employees and contractors?

Yes

No

Reviewer
Notes
3

No

Reviewer
Notes
4

Does the PIA appropriately describe the PII quality and integrity of the data?

Yes
No

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Reviewer Questions

Answer

Reviewer
Notes
5

Yes

Is this a candidate for PII minimization?

No

Reviewer
Notes
6

Does the PIA accurately identify data retention procedures and records retention schedules?

Yes
No

Reviewer
Notes
7

Are the individuals whose PII is in the system provided appropriate participation?

Yes
No

Reviewer
Notes
8

Does the PIA raise any concerns about the security of the PII?

Yes
No

Reviewer
Notes
9

Is applicability of the Privacy Act captured correctly and is a SORN published or does it need
to be?

Yes
No

Reviewer
Notes
10

Is the PII appropriately limited for use internally and with third parties?

Yes
No

Reviewer
Notes
11

Does the PIA demonstrate compliance with all Web privacy requirements?

Yes
No

Reviewer
Notes
12

Were any changes made to the system because of the completion of this PIA?

Yes
No

Reviewer
Notes

General Comments

OPDIV Senior Official
for Privacy Signature

Beverly E.
Walker

Digitally signed by Beverly E. Walker
DN: c=US, o=U.S. Government, ou=HHS,
ou=CDC, ou=People, cn=Beverly E.
Walker,
0.9.2342.19200300.100.1.1=1001440343
Date: 2013.08.08 10:40:30 -04'00'

HHS Senior
Agency Official
for Privacy

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