Privacy Statement

Updated April 19, 2012

Protecting your privacy is very important to us. We do not collect any personally identifiable information (PII) about you during your visit to the NIAMS website unless you choose to provide it to us. We do, however, collect some data about your visit to our website to help us better understand how the public uses the site and how to make it more helpful. We collect information from visitors who read, browse, and/or download information from our website. The NIAMS never collects information for commercial marketing or any purpose unrelated to its mission and goals.

When visitors send e-mail messages containing personal information to the general NIAMS e-mail box, the NIAMS staff members, or contractors hired to assist the NIAMS in carrying out its mission, respond to the e-mails and file them. We may forward e-mails to another entity within the NIH or another government agency which may be better able to answer the inquiry. We don't share them with anyone else.

Types of Information Collected

When you browse through any website, certain information about your visit can be collected. We automatically collect and temporarily store the following type of information about your visit:

  • Domain from which you access the Internet
  • IP address (an IP address is a number that is automatically assigned to a computer when surfing the web)
  • Operating system and information about the browser used when visiting the site
  • Date and time of your visit
  • Pages you visited
  • Address of the website that connected you to our website (such as or

We use this information to measure the number of visitors to our site and its various sections and to help make our site more useful to visitors.

How NIAMS Collects Information

NIAMS uses Webtrends measurement software and Google Analytics software to collect the information in the bulleted list in the "Types of Information Collected" section above. The software collects information automatically and continuously. No personally identifiable information is collected. The NIAMS staff conducts analyses and reports on the aggregated data. The reports are available only to the NIAMS staff and other designated staff and contractors who require this information to perform their duties.

The NIAMS also uses online surveys to collect opinions and feedback from a random sample of visitors. The NIAMS uses the ForeSee Results' American Customer Satisfaction Index (ACSI) online survey to obtain feedback and data on visitors' satisfaction with the NIAMS website. This survey does not collect personally identifiable information. Although the survey invitation pops up for a random sample of visitors, it is optional. If you decline the survey, you will still have access to the identical information and resources at the NIAMS site as those who take the survey. The reports are available only to the NIAMS staff and other designated staff and contractors who require this information to perform their duties.

The NIAMS retains the data from Webtrends, Google Analytics, and ACSI survey results as long as needed to support the mission of the NIAMS website.

How NIAMS Uses Cookies

The Office of Management and Budget Memo M-10-22, Guidance for Online Use of Web Measurement and Customization Technologies allows Federal agencies to use session and persistent cookies.

When you visit any website, its server may generate a piece of text known as a "cookie" to place on your computer. The cookie allows the server to "remember" specific information about your visit while you are connected.

The cookie makes it easier for you to use the dynamic features of web pages. Cookies from the NIAMS web pages only collect information about your browser's visit to the site; they do not collect personal information about you.

There are two types of cookies, single session (temporary) and multi-session (persistent). Session cookies last only as long as your web browser is open. Once you close your browser, the cookie disappears. Persistent cookies are stored on your computer for longer periods.

Session Cookies: We use session cookies for technical purposes such as to enable better navigation through our site. These cookies let our server know that you are continuing a visit to our site. The OMB Memo M-10-22 Guidance defines our use of session cookies as "Usage Tier 1—Single Session." The policy says, "This tier encompasses any use of single session web measurement and customization technologies."

Persistent Cookies: We may use persistent cookies to enable our measurement software to differentiate between new and returning NIAMS visitors. Persistent cookies remain on your computer between visits to the NIAMS website until they expire. We use persistent cookies to block repeated invitations to take the ACSI survey. The persistent cookies that block repeated survey invitations expire in 30 days. The OMB Memo M-10-22 Guidance defines our use of persistent cookies as "Usage Tier 2 — Multi-session without Personally Identifiable Information (PII)." The policy says, "This tier encompasses any use of multi-session web measurement and customization technologies when no PII is collected."

How to Opt Out or Disable Cookies

If you do not wish to have session or persistent cookies placed on your computer, you can disable them using your web browser. If you opt out of cookies, you will still have access to all information and resources at the NIAMS website, but you will not be invited to take our online survey. Instructions for disabling or opting out of cookies in the most popular browsers are located at Please note that by following the instructions to opt-out of cookies, you will disable cookies from all sources, not just those from the NIAMS.

How Personal Information Is Protected

You do not have to give us personal information to visit the NIAMS website. However, if you choose to subscribe to one of our e-mail updates, we collect your e-mail address to complete the subscription process (see the section on "Constant Contact Subscription Management" below).

If you choose to provide us with personally identifiable information, that is, information that is personal in nature and which may be used to identify you (for example, through an e-mail message, request for information, paper or electronic form, questionnaire, customer satisfaction survey, epidemiology research study, etc.), we will maintain the information you provide only as long as needed to respond to your question or to fulfill the stated purpose of the communication. If we store your personal information in a record system designed to retrieve information about you by personal identifier (name, personal e-mail address, home mailing address, personal or mobile phone number, etc.), so that we may contact you, we will safeguard the information you provide to us in accordance with the Privacy Act of 1974, as amended (5 U.S.C. Section 552a).

If NIAMS operates a record system designed to retrieve information about you in order to accomplish its mission, a Privacy Act Notification Statement should be prominently and conspicuously displayed on the public-facing website or form which asks you to provide personally identifiable information. The notice must address the following five criteria:

  • NIH legal authorization to collect information about you
  • Purpose of the information collection
  • Routine uses for disclosure of information outside of NIH
  • Whether the request made of you is voluntary or mandatory under law
  • Effects of non-disclosure if you choose to not provide the requested information.

For further information about the NIAMS privacy policy concerning this website, please contact the NIAMS Web Manager at 301-496-8190.

How the NIAMS uses third-party websites and applications

Third-Party Websites and Applications (TPWA) are web-based technologies that are not exclusively operated or controlled by the NIAMS, such as hosted applications and those embedded on one of our web pages that could cause personally identifiable information (PII) to become available or accessible to the NIAMS, regardless of whether the NIAMS solicits or collects it.

As part of the Open Government Directive, uses a variety of new technologies and social media options to communicate and interact with citizens. These sites and applications include popular social networking and media sites, open source software communities, and more. The following list includes the websites and applications we use and their purposes. For any sites or applications that collect PII, this list also includes details on information collected and how the NIAMS protects your private information.

Data Safeguarding and Privacy

All uses of web measurement and customization technologies will comply with existing policies with respect to privacy and data safeguarding standards. Information Systems (IT) systems owned and operated by the NIAMS are assessed using Privacy Impact Assessments posted for public view on the Department of Health and Human Services website ( Groups of records that contain information about an individual and are designed to be retrieved by the name or other personal identifier linked to the individual are covered by the Privacy Act of 1974, as amended (5 U.S.C. Section 552a). For these records, NIH Systems of Record Notices are published in the Federal Register and posted on the NIH Senior Official for Privacy website. For more information, please refer to the NIH Privacy Policy posted on the website. When web measurement and customization technologies are used, the Privacy Policy/Notice must state:

  • Purpose of the web measurement and/or customization technology;
  • Usage Tier, session type, and technology used;
  • Nature of the information collected;
  • Purpose and use of the information;
  • Whether and to whom the information will be disclosed;
  • Privacy safeguards applied to the information;
  • Data retention policy for the information;
  • Whether the technology is enabled by default or not and why;
  • How to opt-out of the web measurement/customization technology;
  • Statement that opting-out still permits users to access comparable information or services; and,
  • Identities of all third party vendors involved in the measurement and customization process.

Data Retention and Access Limits

The NIAMS will retain data collected using the following technologies long enough to achieve the specified objective for which they were collected. The data generated from these activities falls under the National Archives and Records Administration (NARA) General Records Schedule (GRS) 20-item IC "Electronic Records," and will be handled per the requirements of that schedule (

The NIAMS uses to shorten long URLs for use in e-mail messages, Twitter feeds, and on Facebook pages. collects and provides data on how often e-mail recipients, Facebook, and Twitter users click on the shortened URLs distributed by the NIAMS staff. analytics do not provide any personally identifiable information about visitors who open the shortened links. The privacy policy is available at:


The NIAMS has three Facebook pages:

The NIAMS staff posts news and other items of interest to citizens. If you have a Facebook account or "like" these pages, you can post comments on some pages or click on the "like" option for individual entries. If you comment or click on the "like" button, personally identifying information will be visible to the NIAMS staff and other Facebook site visitors. The amount of visible personal information will depend on your own Facebook privacy settings. You can completely avoid displaying any personally identifiable information by not creating an account, not posting comments, and not clicking on the "like" options in Facebook. The NIAMS does not collect, use or disclose any information about visitors who comment or "like" these pages. Facebook collects and reports on non-personally identifiable information about activities on Facebook pages. This information is password protected and only available to the NIAMS designated staff who require this information to perform their duties. The Facebook privacy policy is available at: External Web Site Policy.

Constant Contact Subscription Management

The NIAMS uses Constant Contact to send updates, alerts and other messages to visitors who subscribe. To subscribe to one of these updates, you must provide an e-mail address and indicate your subscription preferences, including the items you want to receive. [Subscribe to one of the NIAMS Updates.] The e-mail subscriber lists are password protected by Constant Contact. Only the NIAMS managers who send the messages via Constant Contact and staff members who monitor the results of e-mail initiatives have access to the subscriber lists. Constant Contact never allows access to the subscriber lists to anyone outside of the NIAMS for any purpose. Constant Contact collects and provides non-identifying information about the number of messages sent, clicks, and open rates. This information is password protected and only available to the NIAMS designated staff who require this information to perform their duties. The Constant Contact privacy policy is available at:


The NIAMS uses Twitter to send short messages (up to 140 characters) or "Tweets" to share information about the NIH and the NIAMS with visitors and respond to comments and inquiries sent to us via Twitter. While visitors may read the Twitter feeds (@NIH_NIAMS External Web Site Policy and @nihrheumatology External Web Site Policy) without subscribing to them, visitors who want to subscribe to (or follow) these Twitter feeds must create a Twitter account at To create an account, you must provide some personal information, such as name, user name, password, and e-mail address. Visitors have the option to provide additional personal information including a short biography, location, or a picture. Most information you provide for a Twitter account is available to the public, but you can modify how much of your information is visible by changing your privacy settings at the website. The NIAMS will monitor the number of subscribers and respond to comments and queries via Twitter, but the staff never takes possession of the personal information belonging to Twitter followers. We do not collect, maintain, disclose, or share any information about people who follow us on Twitter. The Twitter privacy policy is available at: External Web Site Policy.


The NIAMS posts videos on YouTube to make them available to all of our visitors. You do not need to register with either YouTube or Google (YouTube owner) to watch our videos. When visitors watch videos, YouTube may record non-personally identifiable information about its site usage, such as channels used, videos watched, and data transfer details, to improve its services. If you log on to the YouTube site before watching our videos, YouTube may associate information about your site use with your YouTube account. Commenting on a video while you are logged in would allow others to see information about you associated with your comment; however, the NIAMS videos do not allow viewers to comment at this time. The YouTube privacy policy is available at: