Website Privacy Policy

Last Modified: October 5, 2016

Introduction

The Rare Cancer Research Foundation (“Company”, “we” or “us”), a North Carolina-based 501(c)3 non-profit organization, respects your privacy and is committed to protecting it through our compliance with this Policy. This Policy describes the types of information we may collect from you or that you may provide when you visit the website www.pattern.org or any other website or webpage operated by the Company (our “Website”) and our practices for collecting, using, maintaining, protecting and disclosing that information.

This Policy applies to any information that we collect on the Website, including any information in any e-mails, posts, texts and other electronic messages between you and the Website and any information about you transferred to the Website from other websites.

This Policy DOES NOT apply to information we collect by any other means, including offline collection. This Policy also does not govern the actions of researchers you may choose to share your information with through the Website. Those researchers are bound by applicable privacy laws to use reasonable efforts to maintain the confidentiality, security and integrity of certain information about you that they obtain from us. However, the researchers have their own, separate privacy policies that apply to your relationship with them, and their privacy policies and practices may differ from the policies and practices described here. We encourage you to review their privacy policies and to contact the responsible researcher for more information. Except as noted above, we cannot and do not endeavor to enforce researchers’ compliance with their own privacy policies.

Please read this Policy carefully to understand our policies and practices regarding your information and how we will treat it. If you do not agree with our policies and practices, you can choose not to use our Website. By accessing or using our Website, and by clicking “I AGREE” when the option is presented to you, you agree to this privacy Policy on behalf of yourself or on behalf of your minor child.

If you are a parent or guardian using our Website on behalf of your minor child, additional information about how we treat the information of children under the age of 13 can be found in the section below titled “Protecting Children’s Privacy.”

This Policy may change from time to time. Your continued use of the Website after we make changes is deemed to be acceptance of those changes, so please check the Policy periodically for updates.

What Is “Personal Information” and “Personal Health Information”?

Information we collect on our Website falls into one of three categories:

1) Information by which you may be personally identified, including but not limited to first and last name; home, physical, or mailing address; e-mail address, username or “screen” name; telephone number, including a mobile telephone number; a “persistent identifier” used to recognize a user over time, such as a customer number held in a cookie, an internet protocol (IP) address or unique device ID; and any other information collected that is combined with one or more of the categories of information listed here.

2) Information that relates to your past, present, or future physical or mental health or condition; the provision of health care to you; or the past, present or future payment for the provision of health care to you.

3) Other information that is about you but does not identify you personally, including but not limited to certain demographic information or information about which buttons or links users click on most frequently when they access our Website.

For the purposes of this privacy Policy, information listed in the first category above is considered to be your “Personal Information.” If information in the second category above is combined in any way with your Personal Information, or if there is a reasonable basis to believe that information alone can be used to identify you, it is considered to be your “Personal Health Information.” All other information that does not identify you individually or that is “de-identified” is NOT considered Personal Information or Personal Health Information.

Information We Collect About You and How We Collect It: Enrollment Forms

The principal way we receive Personal Information and Personal Health Information about you is when you choose to register for the Website and fill out our enrollment forms. We collect several types of information from you via our enrollment forms, including:

  • Your first and last name;

  • Contact information such as a telephone number and e-mail address;

  • Demographic information such as your age, race and sex;

  • Information about your medical history and cancer diagnosis;

  • Information about any past or planned procedures to remove cancerous tissue; and

  • Information about your donation of tissue samples and other related data (such as the location and date of your surgery) and samples.

The information we collect on or through our Website may also include information that you voluntarily provide by requesting further services from us (such as customer service assistance), by responding to surveys we might ask you to complete (such as surveys about your satisfaction with the Website) or by responding to follow-up questions from us about your planned donation through our Website. We retain records and copies of your correspondence (including e-mail addresses) if you contact us for such purposes.

If you do not want us to collect this information your choice is (1) not to provide such information in the applicable forms, or (2) not to register for the Website or not to access or use the above-mentioned features of the Website. Please note that by omitting such information or declining to access or use certain features of the Website, the effectiveness of the Website in facilitating productive connections between you and an applicable researcher may be hindered.

Information We Collect About You and How We Collect It: Automatic Collection

When you access, use and navigate through the Website, the Website may use certain technologies (described below) to collect automatically the following information:

  • Traffic Data / Usage Details. When you access and use the Website, we may collect automatically certain details of your access to and use of the Website, including traffic data, logs, and other communication data, your navigation paths through the Website, the resources that you access and use on or through the Website and the referring and exit pages.

  • Computer and Device Information. When you access and use the Website, we may collect information about your computer or mobile device and your internet connection, including your IP address, operating system, browser type, the mobile device’s unique device identifier, mobile network information and the device’s telephone number.

If you do not want us to collect this information automatically your choice is to not access or use the Website.

We use the following technologies for automatic information collection:

  • Cookies (or mobile cookies). A cookie is a small file placed on your computer or mobile device. It may be possible to refuse to accept cookies by activating the appropriate setting on your browser or mobile device. However, if you select this setting you may be unable to access certain parts or features of the Website.

  • Web Beacons. Certain pages or portions of the Website and our e-mails may contain small electronic files known as web beacons (also referred to as clear gifs, pixel tags and single-pixel gifs) that permit us, for example, to count users who have visited those pages or opened an e-mail and for other related usage statistics (for example, recording the popularity of certain content and verifying system and server integrity).

  • Embedded Code. Certain pages or portions of the Website may use embedded hidden code to collect information about usage flows through the Website and other similar usage statistics.

  • Telephone number. When you call into our phone lines we may collect your phone number and caller ID information to properly route the call.

Online Tracking and How We Respond to “Do Not Track” Signals

Tracking involves the use of cookies, web beacons or other embedded code or tracking technologies to collect, analyze and store information on a user’s behavior over time on multiple sites, including information on the sites visited, products viewed, products purchased and other online interactions. Tracking information can be used to enable companies to make interested-based (behavioral) advertising available to users on multiple sites that they visit.

We do not currently collect Personal Information about your on-line activities over time and across third party sites for tracking purposes. We do not currently allow third parties to collect Personal Information on the Website that could be used by them to analyze and store information about your on-line activities over time and across third party sites for tracking purposes. Therefore, the Website does not respond to any “DO NOT TRACK” signals sent by your browser or otherwise.

How We Use Your Information

We use information that we collect about you or that you provide to us, including any Personal Information and Personal Health Information, to:

  • Provide you with the Website and its contents and any other information or services you request from us;

  • Collect and provide (but only after you have authorized us to do so, including through, if applicable, an executed informed consent document) to the applicable researcher your Personal Information and Personal Health Information for the applicable researcher’s use in its research study or program in accordance with the aforementioned authorization;

  • Provide you with information about and aid you in tracking the progress of relevant research studies or programs;

  • Provide you with other information that we think may be of interest to you, in our discretion;

  • Fulfill any other purpose that we describe when you provide the information;

  • Fulfill any other purpose for which you provide it;

  • Carry out our obligations and enforce our rights arising from any contracts entered into between you and us, including our Terms of Use;

  • Notify you when updates to the Website are available and of any changes to any services we offer or provide through it; and

  • Notify you when updates to this privacy Policy occur.

The traffic data, usage details, and “persistent identifiers” we collect help us to improve the Website and to deliver a better and more personalized experience by enabling us to:

  • Estimate our audience size and usage patterns.

  • Learn to improve the “flow,” organization and user interface of the Website.

  • Recognize you when you use the Website and store information about your preferences, allowing us to customize the Website according to your individual interests.

  • Speed up your searches.

We may use the feedback you provide in response to surveys you complete to improve the functionality of the Website and ensure our expectations for quality service are being met by our own employees and by any researchers you choose to interact with through the Website.

Use of Your Information for Promotional, Advertising and Marketing Purposes

We may use your Personal Information to communicate to you information about the efforts of the Company or its affiliates generally, updates about the progress of relevant research studies or programs, or other news, information or items of interest in the patient communities we serve. Currently, we do not otherwise use any of your Personal Information or Personal Health Information for any promotional, advertising or marketing purposes. We do not currently run banner or pop-up ads on the Website, permit direct or indirect e-mail marketing or solicitation or online behavioral advertising by third parties, or sell or otherwise disclose your Personal Information or Personal Health Information to third party marketers or analytics companies.

Disclosure of Your Information

Disclosure of Your Information to Researchers

The principal function of the Website is to facilitate the collection of relevant Personal Information and Personal Health Information from you and to distribute such information to one or more researchers that may use this information in connection with a research study or program. Prior to any such disclosure by us, however, you will be provided with summary information about the applicable researcher’s study or program and asked to provide your authorization for such researcher to use your Personal Information and Personal Health Information consistent with the purposes the researcher has described (including by, if applicable, completing the applicable researcher’s informed consent process). Only after you have provided authorization will we disclose any of your Personal Information or Personal Health Information to any researcher.

PLEASE NOTE: Under applicable privacy laws, you may be given the right to revoke your consent to participation in the research study or program and to revoke your authorization of the use and disclosure of your Personal Health Information at any time. If you choose to revoke your consent/authorization with respect to a particular research study, we will notify the researcher and ask them to delete your Personal Information and Personal Health Information. Please refer to the documentation provided to you by the researcher for instructions on how to revoke your authorization, information about the effects of revoking your authorization on the use and disclosure of your Personal Health Information, and information about any exceptions to your right to revoke your authorization. We cannot control and therefore do not take responsibility for the researcher’s compliance with your request.

Disclosures of Aggregated / De-Identified Data

We may convert or combine your information into de-identified or aggregated data that does not include any Personal Information or Personal Health Information of any individual user. We may use or disclose any such de-identified or aggregated data without restriction.

Except as otherwise expressly provided in this privacy Policy, the Personal Information we collect from cookies or other tracking technologies (i.e., “persistent identifies”) and that relates to your personal use of the Website is not shared with third parties. Other information that we collect from such tracking technologies that does not constitute your Personal Information or your Personal Health Information (e.g. traffic data used to estimate our audience size and usage patterns) may be shared with third parties without restriction.

Other Disclosures of Your Information

In addition, we may disclose Personal Information or Personal Health Information that we collect or that you provide:

  • To our subsidiaries, parent and affiliates;

  • To contractors, service providers and other third parties we use to support our organization and help us operate, maintain and improve the Website and who (1) need to know such information to support our permitted uses of Personal Information and Personal Health Information in accordance with this privacy Policy, and (2) are bound by contractual obligations to keep Personal Information and Personal Health Information confidential and use it only for the purposes for which we disclose it to them;

  • To a buyer or other successor in the event of a merger, divestiture, restructuring, reorganization, dissolution or other sale or transfer of some or all of the Company’s assets, whether as a going concern or as part of bankruptcy, liquidation or similar proceeding, in which Personal Information or Personal Health Information held by the Company about our Website users is among the assets transferred;

  • To fulfill the purpose for which you provide it;

  • For any other purpose disclosed by us when you provide the information;

  • For any other purpose with your authorization;

  • To comply with any court order, law or legal process, including responding to any government or regulatory request;

  • To enforce our rights arising from any contracts entered into between you and us, including our Terms of Use.

  • If we believe disclosure is necessary or appropriate to protect the rights, property, or safety of the Company, the Website’s users or others, including exchanging information with other companies and organizations for the purposes of fraud protection and credit risk reduction.

Except as described above (“Disclosure of Your Information to Researchers”), the Website is not designed to permit you to disclose to any third parties or to make publicly available in any form (e.g., in a public forum or message board) any Personal Information or Personal Health Information about you.

Social Media Sites and Widgets

If you log onto the Website through Facebook or a similar social media site, certain information about you will be transferred to the Website, and the fact that you have logged onto the Website and some of that transferred information may be available to other users of the social media site. That information may be subject to the privacy policies of any such social media site, and you should review those policies before using a social media site to log onto the Website. Any such transferred information will otherwise be subject to the terms of this Policy.

You may be able to use social media widgets such as the Facebook Like button on the Website. These widgets will collect your IP address and identify which page you are visiting on the Website, and make your preference information available to other users of the social media site and third parties. The information collected by such widgets is controlled by third party privacy policies. Please note that by choosing to engage with social media sites in connection with your use of our Website, you may be sharing or disclosing Personal Information and Personal Health Information, including but not limited to your affiliation with the Company or your use of the Website, with other users of the social media site and third parties. You engage with social media or make postings on such sites at your own risk.

Accessing and Correcting Your Information

Accessing and Correcting Your Information You may review, change, refuse our further use or collection of, or request the deletion of the Personal Information or Personal Health Information you entered into an enrollment form at any time by logging into the Website and visiting your account profile page.

Because access to certain Personal Information or Personal Health Information is essential for the proper functioning of the Website and its facilitation of connections between users and researchers, we cannot delete certain portions of your Personal Information or Personal Health Information except by also deleting your user account. We will notify you at the time you request the deletion of any information whether such deletion will result in the termination of your account. We may not accommodate a request to change information if we believe the change would violate any law or legal requirement or cause the information to be incorrect.

Federal law (45 CFR § 164.528) permits users of our Website who have supplied us with Personal Health Information to request an accounting of certain disclosures of their Personal Health Information that we have made to third parties in the past six years. To make such a request, please send an e-mail to requests@pattern.org. Please note that we do not currently make disclosures of Personal Health Information to any third parties except the particular researcher or researchers with which you have enrolled in a study or program, as more fully described in the section titled “Disclosure of Your Information to Researchers.”

Choices About How We Use and Disclose Your Information

You have certain choices regarding the Personal Information or Personal Health Information you provide to us:

  • You can set your browser to refuse all or some browser cookies. To learn how you can manage your Flash cookie settings, visit the Flash player settings page on the Adobe website, accessible here. If you disable or refuse cookies, some parts of the Website may then be inaccessible or not function properly.

  • If you do not wish for us to notify you about general news we believe may be of interest to you (e.g., updates related to the Company or its affiliates, the progress of relevant research studies, or other items relevant to the patient communities we serve) you can opt-out of such communications by clicking on the “Unsubscribe” or “Updating your e-mail preferences,” link in the most recent e-mail you received from us and follow the prompts that appear. Please note that this opt-out does not apply to any transactional e-mails you may receive from us (e.g., confirmation of registration, updates to this Privacy Policy, etc.).

  • As noted above in the section titled “Disclosure of Your Information to Researchers,” you may have the right to revoke your authorization for a researcher’s use and disclosure of your Personal Information and Personal Health Information. Please refer to that section for additional details.

Your California Privacy Rights

California Civil Code Section 1798.83 permits users of our Website who are California residents to request certain information regarding our disclosure of Personal Information to third parties for their direct marketing purposes. To make such a request, please send an e-mail to requests@pattern.org. Please note that we do not currently make disclosures of Personal Information to third parties for direct marketing purposes.

Users Outside of the United States

Our Website is hosted in the United States and our services are provided from the United States. It is possible that certain information will be stored on servers in multiple other countries on the “cloud” or other similar distributed hosting Websites. We provide this Website for use only by persons located in the United States. If, nevertheless, you are a user accessing our Website or services from the European Union or any other region with laws governing personal data collection, use, and disclosure that differ from United States laws, please note that you are transferring your Personal Information and Personal Health Information outside your home jurisdiction, and that by providing your Personal Information and Personal Health Information you are consenting to the transfer of your Personal Information and Personal Health Information to the United States and other jurisdictions as indicated above, and to our use and disclosure of your Personal Information and Personal Health Information in accordance with this policy.

Protecting Children’s Privacy

We take particular care to protect the privacy of children whose information comes into our possession through the Website. If you are accessing the Website on behalf of your minor child, and if you intend to share with us the Personal Information or Personal Health Information of a child under the age of 13, the following additional policies and practices will apply.

We will not condition, and we are prohibited by law from conditioning, any child’s participation in an activity via the Website on the child disclosing more Personal Information than is reasonably necessary to participate in such activity. However, because access to certain Personal Information or Personal Health Information is essential for the proper functioning of the Website and its facilitation of connections between users and researchers, you will not be permitted to proceed with the enrollment process if certain portions of your child’s Personal Information or Personal Health Information are omitted. We will notify you at the time you are completing the enrollment form whether any information is mandatory in order to proceed.

With respect to the Personal Information or the Personal Health Information that we have collected or that you have provided about your child, you have the right to:

  • Request a description of the specific types or categories of Personal Information or Personal Health Information collected by us about your child.

  • Review and change any Personal Information or Personal Health Information collected by us about your child without unreasonable burden, so long as you are able to provide reasonable assurance to us that such request is being made by the parent or legal guardian of the child.

  • Refuse to permit our further use or further online collection of Personal Information or Personal Health Information about your child.

  • Direct us to delete any Personal Information or Personal Health Information we have collected about your child.

For more information, please see the sections above titled “Choices About How We Use and Disclose Your Information” and “Accessing and Correcting Your Information.” As noted above, we cannot delete certain Personal Information or Personal Health Information about your child without also proceeding to delete your user account.

Data Security

We have implemented reasonable measures designed to secure your Personal Information and Personal Health Information from accidental loss and from unauthorized access, use, alteration and disclosure. All information that you provide to us is stored third party servers behind firewalls, and any of our data transmissions provided for in this privacy Policy will occur over a 256bit encrypted SSL connection between the browser and our servers.

The safety and security of your information also depends on you. When we have given you (or when you have chosen) a password for access to certain parts of our Website, you are responsible for keeping that password confidential. We ask you not to share your password with anyone.

Unfortunately, the transmission of information over the Internet is not completely secure. Although we have implemented security measures that we think are adequate, we cannot guarantee the security of your Personal Information or Personal Health Information transmitted to our Website. Any transmission of Personal Information or Personal Health Information is at your own risk. We are not responsible for circumvention of any privacy settings or security measures contained on the Website.

Changes to Our Privacy Policy

We post any changes we make to our privacy Policy on this page. If we make material changes to how we treat our users’ Personal Information or Personal Health Information, we will notify you by e-mail to the primary e-mail address specified in your account and through a notice on the Website home page. The date the privacy Policy was last revised is identified at the top of the page. You are responsible for ensuring we have an up-to-date active and deliverable e-mail address for you, and for periodically visiting our Website and this privacy Policy to check for any changes.

Contact Information

To ask questions or comment about this privacy Policy and our privacy practices, contact us at:

  • The Rare Cancer Research Foundation

  • 112 Duke Street, Suite 101

  • Durham, NC 27701