Questions about rare diseases?
Questions about rare diseases?
Protecting your privacy is important to NCATS. This page outlines our privacy and security policies as they apply to the GARD website. NCATS does not collect any personally identifiable information (PII) about you during your visit to this site unless you choose to provide it. NCATS does, however, collect some data about your visit to better understand how the public uses the GARD website and how to make it more helpful. NCATS collects information from visitors who read, browse and/or download information from this site. NCATS never collects information for commercial marketing or any purpose unrelated to the Center’s mission and goals. Please contact us if you have any questions about our policies.
Types of Information Collected
When you browse through any website, certain information about your visit can be collected. NCATS automatically collects and temporarily stores the following type of information about your visit:
Consent
The site allows you to submit questions, request information, or participate in and share information about programs/studies regarding genetic or rare diseases. To respond to your request, you consent to share your contact information in the form of a name, email address, or phone number.
Please note that by visiting this site, you accept the practices described in this Privacy Statement and consent to our collection and use of your information described in this notice. If we decide to change our privacy policy, we will post those changes on this page, so you are always aware of what information we collect, how we use it, and under what circumstance we disclosed it.
How GARD Collects Information
This website uses Google Analytics measurement software to collect the information in the bulleted list under Types of Information Collected. Google Analytics collects information automatically and continuously. NCATS conducts analyses and reports on the aggregated data from Google Analytics. The reports are only available to this website’s managers and other designated staff who require this information to perform their duties. NCATS retains the data from Google Analytics as long as needed to support the mission of this website.
In addition, users may contact the GARD contact center with requests for individualized support in finding and understanding health information. A user’s contact information and questions may be stored temporarily to enable contact center staff to reply to an inquiry and are periodically deleted.
How GARD Uses Cookies
The Office of Management and Budget (OMB) Memo M-10-22, Guidance of 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. Requests to send cookies from GARD's webpages are designed to collect information about your browser session only; 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 10-22 guidance defines the 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 use persistent cookies to enable Google Analytics to differentiate between new and returning visitors to the GARD website. Persistent cookies remain on your computer between visits to this website until they expire. The OMB memo 10-22 guidance defines the 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.”
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 can still access the information and resources on the GARD website.
Instructions to disable cookies in the most popular browsers are located at https://www.usa.gov/optout-instructions. Note: This will disable cookies from all sources, not just those from GARD's website.
How is Personal Information Protected?
When inquiries are sent to us, we store the question and the email address so that we can respond. Inquiries may be seen by several GARD Information Specialists who are responsible for responding to questions from the public. The email address and all personally identifiable information are removed from the database after 90 days. If the GARD Information Specialist who receives the message does not know the answer to your question, your message may be forwarded to another NIH employee who knows more about the topic.
When you call GARD, your call is routed to an Information Specialist through a third-party vendor called 8x8. If you leave a voice mail message, we keep the recording only as long as needed to respond to your question. GARD staff do not collect or save any personally identifiable information from 8x8 or any third-party vendor-managed functions.
On occasion, GARD may conduct or provide de-identified data for studies on the types of questions sent to us and the answers we give. These studies may involve coding the queries that have been purged of all personally identifiable information to see if there are recurring problems that users have in finding information.
Disclosure
GARD does not disclose, give, sell, or transfer any personal information about our visitors unless required by law enforcement or by statute.
Site Security
This site is supported by the U.S. Government. It is protected by various provisions of Title 18, U.S. Code. Violations of Title 18 are subject to criminal prosecution in federal court.
For site security purposes and to ensure that this service remains available to all users, we use software programs to monitor traffic to identify unauthorized attempts to upload or change information, or otherwise cause damage. In the event of authorized law enforcement investigations, and pursuant to any required legal process, information from these sources may be used to help identify an individual.
Contact Us
For additional information on our privacy policy, please see the NIH privacy statement and the NCATS privacy statement. If you have questions about NIH privacy policy, please contact the NIH Senior Official for Privacy at privacy@mail.nih.gov or call 301-451-3426. All other requests regarding rare diseases or this site can be directed to GARD Contact Form or phone number 1-888-205-2311.
Types of Information Collected
When you browse through any website, certain information about your visit can be collected. NCATS automatically collects and temporarily stores the following type of information about your visit:
- Domain from which you access the Internet.
- 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 GARD (such as Google or Bing ).
- The keywords you enter into our search box.
Consent
The site allows you to submit questions, request information, or participate in and share information about programs/studies regarding genetic or rare diseases. To respond to your request, you consent to share your contact information in the form of a name, email address, or phone number.
Please note that by visiting this site, you accept the practices described in this Privacy Statement and consent to our collection and use of your information described in this notice. If we decide to change our privacy policy, we will post those changes on this page, so you are always aware of what information we collect, how we use it, and under what circumstance we disclosed it.
How GARD Collects Information
This website uses Google Analytics measurement software to collect the information in the bulleted list under Types of Information Collected. Google Analytics collects information automatically and continuously. NCATS conducts analyses and reports on the aggregated data from Google Analytics. The reports are only available to this website’s managers and other designated staff who require this information to perform their duties. NCATS retains the data from Google Analytics as long as needed to support the mission of this website.
In addition, users may contact the GARD contact center with requests for individualized support in finding and understanding health information. A user’s contact information and questions may be stored temporarily to enable contact center staff to reply to an inquiry and are periodically deleted.
How GARD Uses Cookies
The Office of Management and Budget (OMB) Memo M-10-22, Guidance of 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. Requests to send cookies from GARD's webpages are designed to collect information about your browser session only; 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 10-22 guidance defines the 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 use persistent cookies to enable Google Analytics to differentiate between new and returning visitors to the GARD website. Persistent cookies remain on your computer between visits to this website until they expire. The OMB memo 10-22 guidance defines the 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.”
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 can still access the information and resources on the GARD website.
Instructions to disable cookies in the most popular browsers are located at https://www.usa.gov/optout-instructions. Note: This will disable cookies from all sources, not just those from GARD's website.
How is Personal Information Protected?
When inquiries are sent to us, we store the question and the email address so that we can respond. Inquiries may be seen by several GARD Information Specialists who are responsible for responding to questions from the public. The email address and all personally identifiable information are removed from the database after 90 days. If the GARD Information Specialist who receives the message does not know the answer to your question, your message may be forwarded to another NIH employee who knows more about the topic.
When you call GARD, your call is routed to an Information Specialist through a third-party vendor called 8x8. If you leave a voice mail message, we keep the recording only as long as needed to respond to your question. GARD staff do not collect or save any personally identifiable information from 8x8 or any third-party vendor-managed functions.
On occasion, GARD may conduct or provide de-identified data for studies on the types of questions sent to us and the answers we give. These studies may involve coding the queries that have been purged of all personally identifiable information to see if there are recurring problems that users have in finding information.
Disclosure
GARD does not disclose, give, sell, or transfer any personal information about our visitors unless required by law enforcement or by statute.
Site Security
This site is supported by the U.S. Government. It is protected by various provisions of Title 18, U.S. Code. Violations of Title 18 are subject to criminal prosecution in federal court.
For site security purposes and to ensure that this service remains available to all users, we use software programs to monitor traffic to identify unauthorized attempts to upload or change information, or otherwise cause damage. In the event of authorized law enforcement investigations, and pursuant to any required legal process, information from these sources may be used to help identify an individual.
Contact Us
For additional information on our privacy policy, please see the NIH privacy statement and the NCATS privacy statement. If you have questions about NIH privacy policy, please contact the NIH Senior Official for Privacy at privacy@mail.nih.gov or call 301-451-3426. All other requests regarding rare diseases or this site can be directed to GARD Contact Form or phone number 1-888-205-2311.