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Privacy Policy

The FTD Disorders Registry LLC (FTDDR or the Registry) is committed to protecting the privacy of our participating members. How we collect, use, share, and protect information is described below.

In addition to the Privacy Policy, please carefully review our Terms and Conditions and Personal Data Use Table before accessing, using, or interacting with FTDDR. For future reference, all of these documents are available as links on the Registry’s home page.

Of note, the Privacy Policy described here applies only to FTDDR and our website (www.FTDregistry.org) — and not to services, applications, or links that take you to other websites.


OVERVIEW

  • We protect all information that you provide, and it is stored in a highly-secure environment.
  • Personally identifiable information you provide to join the Registry is never shared. It is accessible only by select FTD Disorders Registry staff to manage your account.
  • Your information is “de‐identified” and maintained in the Registry according to a unique coded identification number.
  • De‐identified information may be shared with researchers, clinicians, and other members of the scientific or pharmaceutical community, but cannot be traced to you as an individual.
  • We will never sell, trade, or rent any personal information you provide to us.
  • You may remove yourself from the Registry and unsubscribe from our emails at any time.

OUTLINE

 

PERSONAL INFORMATION WE COLLECT

The FTD Disorders Registry collects the following categories of personal information:

Name and Contact Information. First name, middle name, last name, email address, postal address, phone number, and other similar contact information.

Demographic Information. Information about you such as your age, gender, country, race/ethnicity, and diagnosis.

Internet or Other Similar Network Activity. Information about how you interact with our website, social media accounts, emails, and/or research surveys.

Device Information. Information about the devices you use to access our research surveys, such as browser, operating system type, device ID, and IP address. 

Biometric Information. Information about your genetic, physiological, behavioral, and biological characteristics.

How We Collect Personal Information

Self-Provided Information. The FTD Disorders Registry collects self-provided information when you register online for the Contact Registry or the Research Registry, complete a survey, and submit an online form. 

Automatically Collected Information. Session cookies are used to collect an engagement history of your interactions with the Registry’s emails, social media accounts, and website. The Registry’s survey software automatically collects certain technical information.

How we use personal information

The FTD Disorders Registry is committed to only collecting the information necessary to conduct activities required by law, by consent, and for legitimate interests. For more details about how we use your information, please see our Personal Data Use Table.

The personal information we collect may be used for one or more of the following purposes: 

  1. To create and validate your Registry account (i.e. age validation, information required by the NIH to generate a Global Unique Identifier).
  2. To track the number of unique FTD cases in the Registry and link-related accounts (dyads/triads).
  3. To send automated communications that facilitate your Registry participation such as confirmation emails, survey notifications, study reminders, updates to this Privacy Policy and our Terms and Conditions, technical notices, and other account-related items.
  4. To send newsletters and other information regarding frontotemporal degeneration (FTD)  that may be of interest to you.
  5. To send targeted communications for resolution of account issues or in response to your contact/material requests.
  6. To provide individualized clinical trial information based on information that you provide.
  7. To perform population studies within the Registry.
  8. To inform and shape medical research for FTD by providing de-identified data to projects that pass the Registry’s rigorous review process.
  9. For research and analysis aimed at improving website user-experience.
  10.   For research and analysis aimed at improving Registry communications.
  11.   To troubleshoot issues you may have with survey software.
  12.   To respond to law enforcement requests and as required by applicable law, court order, or governmental regulations.

How we store personal information

No one can provide an absolute data security guarantee; however, your information will be transmitted and stored using state‐of‐the‐art security systems similar to those that protect websites used by banks and electronic health systems.
 
FTD Disorders Registry protocol requires that we keep data indefinitely unless otherwise specified by the participant. All study information is stored in linked data tables. Identifying information is stored in separate linked tables allowing health data to be reviewed without personal identifiers. Personal information can only be accessed by select FTD Disorders Registry staff on a strictly “need-to-know” basis.

Other security precautions include:

Data Transmission. The FTD Disorders Registry currently utilizes a 128‐bit secure socket layer (SSL) protocol which protects all data transmission sent over the internet between the web server and every client machine.

Secure Servers. All study data is housed on a secure server.

Antivirus Software. All servers are protected from viruses using anti‐virus software. This software automatically checks for virus signature file updates once an hour, and if necessary, directly updates itself. All antivirus software is monitored and network personnel notified in the event that the software stops functioning on a server.

Firewall. The network, including all the servers that store our research data, is behind a secure firewall that does not allow unauthorized access to any research data server.

Disaster Recovery. The study database is backed up regularly to ensure that no data is lost. Our disaster recovery system also follows Standard Operating Procedures to maintain full security of backup data.

Cloud Services. In addition to using our secure servers, we may use your data with cloud storage and computing services to assist with communication, data collection, storage, and processing. Third‐party vendors will be vetted for their security practices and will meet or exceed privacy and security standards for electronic research health records management.

Who has access to Registry Data?

Personal information is never shared with third parties, except when required for legal purposes or investigations. The personally identifiable information that you provide to join the Registry is only seen by select FTD Disorders Registry staff.

De-identified data may be requested by physicians, study centers, and other allied organizations to conduct research.

Such requests are reviewed by the Registry Director, Scientific Advisory Board, and management staff. Requests are vetted for scientific merit, and approvals are documented.

Registry communications

Occasionally, the FTD Disorders Registry will contact you via the email address, telephone number, or postal address provided during registration. Communications may include resolving account questions, distributing Registry or FTD-related news, and providing research notifications. You may opt-out of receiving FTDDR communications or change your contact preferences at any time.

Your data protection rights

Every user is entitled to the following:

The right to access. You have the right to request copies of your personal data. We may charge you a small fee for this service.

The right to rectification. You have the right to request that the Registry correct any information you believe is inaccurate. You also have the right to request that we complete information you believe is incomplete.

The right to erasure. In some circumstances, you have the right to request that the Registry erase your personal data without undue delay. If you exercise this right, your account will be deactivated and the identifying information in your profile will be removed. However, any de-identified data shared before your request cannot be retrieved.

The right to restrict processing. You have the right to request that the Registry restrict the processing of your personal data under certain conditions.

The right to object to processing. Under certain conditions, you have the right to object to the Registry’s processing of your personal data.

The right to data portability. Under certain circumstances, you have the right to request that the Registry transfer your personal information to another organization or directly to you in a structured, commonly used, and machine-readable format.

The right to withdraw consent. To the extent that the legal basis for our processing of your personal information is consent, you have the right to withdraw that consent at any time.

If you make a request, we have one month to respond to you. If you would like to exercise any of these rights, please contact us:

FTD Disorders Registry LLC
2700 Horizon Dr., Suite 120
King of Prussia, PA 19406

What are cookies?

Cookies are text files placed on your computer to collect standard Internet log information and visitor behavior information. When you visit our website, we may collect information from you automatically through cookies or similar technology.

For further information, visit allaboutcookies.org.

How we use cookies

The Registry uses cookies in a variety of ways to improve your experience, including:

  • Keeping you signed in
  • Understanding how you interact with the Registry’s emails, social media posts, and Website

We may link the information we store in cookies with other information you submit while on our Website.

Types of cookies we use

The Registry uses session cookies to recognize you on our website and remember your previously selected preferences. Session cookies also allow you to proceed through the many pages of the Website without needing to log in at each new area you visit.

How to manage your cookies

You can set your browser not to accept cookies, and the above website tells you how to remove cookies from your browser. However, in a few cases, some of our website features may not function as a result.

Privacy policies of other websites

The Registry’s website contains links to other websites. Our Privacy Policy applies only to our website. If you click on a link to another website, please read their privacy policy.

Changes to our privacy policy

The Registry keeps its Privacy Policy under regular review and places any updates on this web page. This Privacy Policy was last updated on 9 December 2020.

How to contact us

If you have any questions about the FTD Disorders Registry’s Privacy Policy, the data we hold on you, or you would like to exercise one of your data protection rights, please contact us.

FTD Disorders Registry LLC
2700 Horizon Dr., Suite 120
King of Prussia, PA 19406

This Privacy Policy was last updated on December 11, 2020.

[protocol FTDDR-001v1.1; WIRB study #1162895; original protocol approval 03-07-2016]