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Privacy Policy

Last Update: July 1, 2020

PLEASE READ THIS PRIVACY POLICY CAREFULLY

Table of Contents

ABOUT TREND COMMUNITY

TREND Community Inc. (“TREND,” “we,” “us,” “our”) is a digital health technology company that was founded by parents who understand the needs of parents and other community members dealing with rare and underserved diseases. As parents of a child with a rare disease (Prader-Willi Syndrome) who share very personal information about our journey as caregivers on social media, we truly understand your concerns about privacy. Our mission is to inspire solutions that accelerate treatment discovery and improve the quality of life for those of us living with or caring for those with rare and underserved diseases by listening to communities and uniting stakeholders around them.

First and most importantly, the purpose of our analysis is to shed light on the prominent burdens and pressing unmet needs of your community. Most rare diseases have no cure and limited treatment options. One of the significant challenges that innovators encounter is the lack of data about these diseases. While there is a wealth of existing anecdotal information shared by patients and caregivers in their conversations on social media, it can be difficult to meaningfully extract these insights from such vast amounts of data.

TREND uses to analyze years of conversations shared within social networks to quantify disease burden, disease management strategies, and possible unmet needs. TREND uses these data to create Community Voice Reports and other products, which are shared back with the community for free, and used by its partners and sponsors.

TREND STAKEHOLDERS

TREND’s mission starts with its most important stakeholders, the community of people living with or caring for those with rare and underserved diseases. TREND learns from these communities and provides its Community Voice Reports to these communities for free.

  • Communities use TREND data to:
    • Inform medical and support teams;
    • Educate family members;
    • Catalyze research;
    • Spread awareness and advocacy;
    • Inform FDA and other regulatory agencies.

In addition to the communities, TREND’s other stakeholders also include its partners and clients – foundations, medical researches, pharmaceutical and biotechnology companies, etc – who sponsor or pay for reports or the use of the insights TREND generates from the social data.

  • Clients and partners use TREND data to:
    • Establish disease natural history;
    • Identify unmet therapeutic needs;
    • Understand quality of life issues;
    • Design better clinical trials;
    • Build a case for patient-centered regulatory approvals.

OUR IMPACT

TREND has produced reports for over a dozen rare disease communities and several new communities are currently in the pipeline. TREND’s work is already having a profound impact. Here are some examples:

  • Prader-Willi Syndrome (PWS): Through social media analytics, TREND discovered that issues of sleep were discussed more frequently than most commonly recognized symptoms. TREND’s report inspired pediatric neurologists at Texas Children’s Hospital to further explore this issue in collaboration with TREND. Together we have published and presented our work at conferences. A biotechnology company bringing a drug to market here in the US is now preparing a clinical trial for PWS as a direct result of the awareness we raised.
  • Rare Dermatology: TREND is working with several groups who live with rare skin conditions and was invited to present its data at the recent Global Skin conference in early June in Milan. TREND analyzed the data from multiple rare skin conditions to identify the unmet needs common to all of the communities. These data are driving initiatives important to all alliance members.
  • Narcolepsy: Our own child, as well as other children within the PWS community, was diagnosed with a second rare disease, narcolepsy, as a result of the insights gained.

COMMITMENT TO PRIVACY & TRANSPARENCY

Privacy is a priority at TREND and integral to its business practices and products. TREND is committed to maintaining confidentiality and, wherever possible, anonymity. TREND strives to minimize the amount of personal data it receives, and further anonymize it during the analysis process to ensure that it cannot be traced back to any individual. Indeed, in most instances even TREND cannot trace the data to any individual person. TREND’s reports are summaries of or are drawn from a community’s experience, and do not include data that can be traced back to an individual unless TREND has that person’s specific consent, such as when TREND includes individual data or a direct quote. TREND consults with domain experts in both privacy and to remain abreast of current regulations and to ensure that everything TREND does is both legal and ethical. TREND also takes steps to keep the personal information it gathers from the use of its website trend.community (the “Website”) private and secure, and does not share that information with third parties, unless otherwise specified in this policy.

PERSONAL & NON-PERSONAL INFORMATION

TREND incorporates the following definitions of personal and non-personal information.

Personal Information

Personal information is information that can be specifically tied to an individual such as a person’s:

  • Name;
  • Telephone Number;
  • Address;
  • E-mail Address;
  • Work Information;
  • Date of Birth;
  • Medical History;
  • Username;
  • Password.

TREND also collects IP addresses when you use the Website, which in some circumstances can be considered personal information.

Non-Personal Information

Non-personal information is any information about an individual that does not reveal their specific identity, does not directly relate to an individual, and cannot be connected back to an individual, such as:

  • Aggregated information;
  • Personal information that has been de-identified or anonymized;
  • Browser and device information;
  • Information collected through cookies, pixel tags and other technologies that do not identify an individual;
  • Website usage data.

In addition to the uses otherwise specified under this policy, TREND may use non-personal information in the following ways:

  • To make the Website more useful to users;
  • Reports for internal use;
  • To customize the information or services that are of interest to a specific user;
  • To share or license it to third parties (See Sharing Information With Third Parties;
  • Provide aggregated “traffic statistics” and “response rates” to third parties.

DATA COLLECTION FROM SOCIAL PLATFORMS & INTERVIEWS

TREND’s social media analytics begins with the data created by social media community groups. The specific types of data TREND collects, and how TREND uses that data, depends on the social media network from which it originated.

Facebook

TREND collects only de-identified data from Facebook groups and pages. Before TREND collects any data from a Facebook group or page, it meets with the administrator(s) to discuss what TREND does, and how it might partner with the community. TREND then works with the administrator(s) to craft a statement notifying the group of TREND and its plans. This statement gives the membership an opportunity to ask questions and voice any concerns. At least one group administrator must sign a TREND Data Access Agreement indicating that they give TREND permission to analyze the group or page conversations before TREND obtains any information from that group or page. Once the TREND Data Access Agreement is signed, an administrator installs the TRENDshare app in the apps section of the group and initiates the data pull. TRENDshare is a sanctioned Facebook developer API (an interface or communication protocol between a client and a server intended to simplify the building of client-side software) that allows TREND to receive the anonymized conversation data for analysis.

The data TREND obtains from Facebook does not include any user profile information. Indeed, TREND does not collect user IDs and does not have a way to connect any post or comment to a specific user. The data TREND collects do not even allow it to determine that a set of comments and posts are linked to the same person. TREND neither receives nor has access to the names or other identifying information about the people in the group or people following the page.

The information TREND collects from the Facebook groups includes the following:

  • A randomly assigned ID for each post and comment, as well as the randomly assigned ID of a parent post and parent comment. These IDs are random, arbitrary, and not associated with the person who posted or their Facebook profile;
  • Information about the timing of the post or comment;
  • The contents of the post or comment;
  • The type of post (i.e. status, photo, video, link, or event);
  • Whether or not a link exists in a post;
  • Information about the number of Facebook reactions;
  • The number of comments to a post;
  • The number of reactions.

The only information used as part of TREND’s analysis is data collected from the text of the anonymized Facebook post or comment. The only way that TREND might inadvertently collect personal data in this process is if the text of a comment or post identifies a person or other associated individuals. TREND never stores the keys to reverse this process and is not able to reverse engineer the identities of the individuals who made posts or comments.

The information TREND collects from Facebook may be used to develop the following:

  • Community Voice Reports;
  • Data Exploration Reports;
  • Community Impact Reports;
  • Posts in the Website’s “News” page;
  • Other reports, as necessary.

TREND Connect™ – Social Network and Screening Portal

TREND Connect is an invitation-only online platform where patients and caregivers are invited to participate in moderated discussions, tell their stories, post photos, and journal about their daily experiences within specific communities (“TREND Connect Communities”). Upon joining, participants sign a consent to share their de-identified data for analysis. Information pulled from TREND Connect and used as part of its analysis include:

  • An ID associated to a specific community discussion. This information is used for categorizing the diseases;
  • The content of the message that is posted on TREND Connect;
  • The number of likes to a comment and/or post;
  • The number of comments to a post;
  • Photos that may be used as data for specific initiatives, in which case TREND obtains specific consent to use the photos for research.

Unlike the information gathered from Facebook, TREND does not anonymize the information posted on TREND Connect. Therefore, the raw data that are collected through TREND Connect may include personal information. However, TREND does not share this personal information with anyone outside of the relevant TREND Connect Community without explicit consent. TREND only uses these data for analysis after receiving participants’ consent and de-identifying it.

Please note that any information that you volunteer in the TREND Connect platform will be accessible to other TREND Connect users. TREND cannot control what other TREND Connect users do with the information you share on the TREND Connect platform.

TREND may use the data it collects from TREND Connect and de-identifies in:

  • Community Voice Reports;
  • Data Exploration Reports;
  • Community Impact Reports;
  • Posts in the Website’s “News” page;
  • Other reports, as necessary.

TREND uses cookies to collect session data in order to determine whether a user is currently logged in to TREND Connect or TREND Research. TREND does not use Google Analytics for its TREND Connect or TREND Research platforms.

TREND Research

TREND Research is a cloud-hosted research and data management platform. It allows subscribing organizations (“TREND Research Organizations”), which can be individuals, groups of researchers, companies, institutions, or research organizations, to create portals to support their research goals. TREND Research Organizations use TREND Research to create patient registries, track clinical research, and capture real-world data.

TREND Research participants will receive an invitation to a specific TREND Research portal, where they will be asked to provide consent for the TREND Research Organization to collect their data through that specific portal. The participant typically provides data by answering surveys created by the TREND Research Organization. Examples of the type of data typically collected include, but are not limited to:

  • Socio-demographic data;
  • Quality of life data;
  • Treatment and management of care data;
  • Disease progression data;
  • Diagnosis data.

The data collected through the portals are owned by the associated TREND Research Organization in accordance with the terms of the consent provided to the participants.

Interviews

TREND also gathers information through one-on-one interviews with patients and/or caregivers, which are conducted in person or by videoconference. TREND only shares this information if the patient and/or caregiver gives their consent. TREND may use the information from these interviews to:

  • Create Patient Story Posters, which can be exhibited in the corporate office, at conference, or other venues to raise awareness for the community;
  • Gather quotations, which are anonymized;
  • Develop Community Impact Reports;
  • Create posts in the Website’s “News” page;
  • Develop other reports, as necessary.

Reddit

TREND also reviews public content on Reddit for information about diseases.

The information that TREND collects from Reddit includes the following:

  • The content of posts and comments;
  • The author id of the posts or comments;
  • Information about the order in which the posts or comments were made;
  • Information about the timing of the post or comment;
  • The public link to the conversation online, to share with researchers should they want to read the conversation in its original form;
  • The number of comments to a post.

TREND does not collect media (such as pictures) from Reddit.

The information TREND collects from Reddit may be used to develop the following:

  • Community Voice Reports;
  • Data Exploration Reports;
  • Community Impact Reports;
  • Posts in the Website’s “News” page;
  • Other reports, as necessary.

Other Forms of Data Collection

TREND also collects data from email listservs and other closed discussion groups where the participants know of and consent to TREND’s data collection. TREND’s process for collecting data through email listservs and closed discussion groups is similar to the process for Facebook. The remainder of TREND’s data collection is from public platforms, such as Reddit, Twitter, Instagram, or blogs – TREND can only access these data if it is public.

When using these data, TREND does not link the information to a name, username, or other identifier. TREND also does not collect media (such as pictures) from these sources.

HOW TREND USES COLLECTED SOCIAL MEDIA INFORMATION

Community Voice Report

A Community Voice Report is an overview of the topics discussed by a patient community on social media. Working with community leaders, TREND accesses and analyzes the conversations of patients and caregivers on social media. TREND’s Community Voice Reports quantify topics related to disease burden, disease management, and possible unmet needs discussed by the group. For example, Community Voice Reports list the trending topics that are discussed in a specific Facebook group or other social media discussion group.

Community Voice Reports include summaries and aggregated information. They never include personal information and none of the topics discussed in a Community Voice Report are attributable to any individual. We never use direct quotations from social media. Community Voice Reports do include anonymized quotations provided to TREND in one-on-one interviews with explicit consent. Direct quotations from social media postings are never included in Community Voice Reports. See Use of Quotations for more information.

The information gathered and used in Community Voice Reports comes primarily from social media platforms, such as Facebook groups, Instagram, Twitter, and Reddit. Email listervs, blogs, and other closed discussion groups are also consulted. This information is sometime supplemented with information gathered through TREND Connect and one-on-one interviews, the contents of which are used only with the consent of the participants. For more information on how TREND collects information from each of these sources, refer to the Data Collection section.

The Community Voice Reports are shared free of charge with the community from which TREND obtained information. For example, if information from a Facebook group is used to create a Community Voice Report, that final report will be shared with that Facebook group. TREND encourages community members to share the Community Voice Report with their medical and support teams, family members, teachers, researches, and pharmaceutical and biotechnology companies, as well as anyone else who can benefit from a better understanding of issues facing a rare disease community. Community Voice Reports are being used by communities and advocacy organizations to:

  • Spread awareness about the specific disease;
  • Design better patient registries;
  • Understand quality of life issues;
  • Provide evidence to the FDA and other regulatory agencies.

TREND also provides the Community Voice Reports to its clients who may be recognized as providing funding in support of the work to produce each report. Pharmaceutical companies and other stakeholders use the reports to:

  • Establish disease natural history;
  • Identify unmet therapeutic needs;
  • Understand quality of life issues;
  • Design better clinical trials;
  • Build cases for patient-centered regulatory approvals.

Information from the Community Voice Reports can also be used in Community Impact Reports.

Custom Data Explorations

Data Explorations further analyze existing social data to uncover deeper insights. Unlike the breadth of a Community Voice Report, Data Explorations examine a single topic and reanalyze the surrounding posts, comments, and feedback to better understand the community’s interest.

The level of analysis done for Data Explorations depends on the depth requested by TREND’s client:

  • A tier 1 data exploration may answer a question about how many times certain terms or phrases are used within community conversations.
    Example: How many times terms such as CBD, hemp, marijuana used within community conversations?
  • A tier 1 data exploration may answer a question about how many times certain terms or phrases are used within community conversations.
    Example: How many times terms such as CBD, hemp, marijuana used within community conversations?
  • A tier 2 exploration may identify posts that contain specific terms or phrases and utilize human analysts to provide context based on pre-defined questions.
    Example: What are patient perspectives on the risks and benefits associated with gene therapy?
  • A tier 3 exploration may require collaboration with a subject matter expert to develop a codebook that will be used to re-analyze social data and quantify the output.
    Example: How are patients affected by disordered sleep?

Like the Community Voice Reports, the information gathered to develop Data Explorations comes from the data TREND receives from TREND Connect Communities and other communities on social media, as detailed in the Data Collection section of this policy.

Patient Story Posters

With the consent of patients and/or caregivers TREND uses the information it gathers from one-on-one interviews to create Patient Story Posters, which can be exhibited in the corporate office, at conferences, and other venues to raise awareness for the community.

Community Impact Reports

TREND creates Community Impact Reports to demonstrate unmet medical needs for individuals affected by certain diseases and urgency for treatments. These reports are generated from data compiled from the following sources:

  • Community Voice Reports;
  • Data Exploration Reports;
  • Interviews and Focus Groups.

Community Impact Reports are developed for TREND’s clients, who can use the reports for purposes such as support for FDA submissions, payer negotiations, and other patient-centered initiatives.

Other Uses

TREND may also publish its findings in peer-reviewed journals, which may be co-authored by community partners and/or clients, present the findings at scientific and patient advocacy conferences, or post the findings on the Website’s “News” page. TREND compiles these findings by gathering information from: Community Voice Reports, Data Explorations, Health Initiatives, Interviews, Focus Groups, and Surveys.

TREND also uses the data from its reports to find unmet needs of certain communities. In some cases, TREND will organize and fund an initiative, known as a “Health Initiative,” where people can apply to participate in a study. All participants sign a consent form before participating.

USE OF QUOTATIONS

TREND uses quotations that are provided by consenting participants through one-on-one interviews or online focus groups conducted on the TREND Connect platform. The participants provide consent to TREND to use their words publicly, but the quotations are anonymized. TREND uses the quotations in:

  • Community Voice Reports;
  • Data Exploration Reports;
  • Community Impact Reports;
  • Patient Story Posters.

DATA COLLECTION FROM TREND COMMUNITY WEBSITE

In addition to the social media analytics described under Data Collection TREND also receives and stores information when users visit the Website. Examples of information TREND receives through visits to its Website include:

  • Information users provide by filling out forms on the Website, including names, email addresses, and health conditions;
  • Information users provide when contacting TREND through the Website or by email;
  • Search queries on the Website.

TREND uses the information for such purposes as responding to requests, keeping users informed of news and information about TREND, sending invitations to participate in TREND Connect, customizing future visits to the Website, improving the Website or TREND’s products and services, and communicating with users.

Please note that the TREND Connect platform is a function of the Website. For more information about how TREND handles information shared through TREND Connect, see TREND Connect™ – Social Network and Screening Portal.

Automatic Information TREND Collects During Websites Visits

The Website also collects a set of general data and information during each visit. This information includes:

  • Browser type and the version used;
  • Operating system;
  • The website from which the user accessed the Website (so-called referrers);
  • The visited links within the Website;
  • Accessed/visited pages;
  • The date and time of Website access;
  • Internet Protocol (IP) address and domain name;
  • Internet service provider;
  • Other similar data and information required for security purposes in the case of
  • attacks on our information technology systems.

TREND uses this information to:

  • Deliver the contents of the Website correctly;
  • Optimize the content of the Website and the advertising for it;
  • Improve the long-term functionality of TREND’s information technology systems and the technology of the Website;
  • Recognize users when they return to the Website;
  • Monitor and respond in case of a cyber attack;
  • Provide information to law enforcement authorities in the event of a cyber attack.

In general, TREND uses this information to improve the security and performance of the Website as well as to evaluate and improve the products and services it offers, whether on the Website or otherwise. Other than the IP address, TREND does not automatically collect personal information, though in some places on the Website the user has the opportunity to send TREND such information. For example, users can sign up for TREND’s newsletter, fill out a request for an invitation to TREND Connect, or share their stories on the TREND Connect platform. See TREND Connect™ – Social Network and Screening Portal for details regarding information automatically collected through TREND Connect.

For more information about these automated collection techniques, see Use of Cookies.

Use of Cookies

Under some circumstances, TREND also collects information about the way the Website is used by employing what are known as browser cookies. Session-based cookies last only while a user’s browser is open, and the browser will automatically delete any cookies once the user closes out of the browser. Persistent cookies last until the user or the user’s browser delete them or until they expire. TREND uses persistent cookies. Visiting the Website or using any of TREND’s services is an express agreement to the use of cookies as described in this policy.

Cookies are small text files that are saved to the user’s computer automatically and that store certain settings and data to share with TREND’s system about the user’s browser. In general, a cookie contains the name of the domain from which the cookie data were sent as well as information about the age of the cookies and an alphanumerical identifier.

Cookies help TREND improve its Website and can enable TREND to offer users a better and more tailored service through device recognition and pre-settings available to the users. TREND also uses cookies to handle authentication when users engage with its applications. The use of cookies is also necessary for participation in research initiatives or discussion spaces that TREND hosts on its TREND Connect or TREND Research platforms.

In the cookies TREND uses, only the data explained above about the use of the Website will be stored. There is no association with a specific user. Instead, an identification number is assigned to the cookie (“cookie ID”). The cookie ID will not be connected to names, IP addresses, or to similar data that would allow the cookies to be connected to the user.

Users who do not wish to use browser cookies can set up their browser so that the storage of cookies is not accepted. Please note that in this case, use of the Website or TREND’s services may be restricted or unavailable.

Google Analytics. The Website use Google Analytics, a web analytics service provided by Google, Inc. (“Google,” www.google.com), 1600 Amphitheatre Parkway, Mountain View, CA 94043, USA. Google Analytics uses “cookies,” which are text files placed on a user’s computer to help the Website analyze how users interact with the sites. TREND does not utilize this service for any of TREND’s applications (e.g., TREND Connect). The information generated by the cookies will be transmitted to and stored by Google on servers in the United States.

Google normally anonymizes IP addresses, and only rarely transfers the whole IP address from outside the US to a Google server in the US. In those cases, the IP addresses are shortened upon arrival on Google’s servers. Google uses this information on behalf of TREND in order to evaluate use of the Website, compile reports on website activity for website operators and provide them other services relating to website activity and internet usage. The IP address that a browser conveys within the scope of Google Analytics will not be associated with any other data held by Google. You may refuse the use of cookies by selecting the appropriate settings on their browser, however, please note that doing so may limit the Website’s functionality.

Google may also transfer this information to third parties if required to do so by law, or where third parties process the information on Google’s behalf.

For further information please visit:http://www.google.com/analytics/terms/gb.html.

By using Google Analytics, TREND aims to provide a faster and more stable service on the Website. Google Analytics allows TREND to optimize the loading times of the Website and better understand how users interact with them. TREND’s legitimate interest in doing so is to allow improvements to the Website’s performance and to enhance TREND’s services for visitors to the Website.

Use of the Website is considered consent to Google processing data in the manner and for the purposes set out in this policy.

TREND has concluded an appropriate data processing addendum with Google in order to fulfill privacy requirements under the GDPR.

Users can also opt-out from being tracked by Google Analytics in the future by downloading and installing Google Analytics Opt-out Browser Add-on (https://tools.google.com/dlpage/gaoptout) for their current web browser. This places an opt-out cookie, which prevents the future collection of data when visiting TREND’s (or another) Website. Deactivating individual tracking services (e.g. by setting an opt-out cookie) will impact all affected tracking tags that are part of Google Analytics. Please be aware that opting out may cause some of the Website’s features to be unavailable. See What Choices Do Website Visitors Have? for more information.

For a summary of the cookies TREND uses, refer to the following table:

DomainCookie NameExpirationDescription
trend.communitytrend_jwt24 hoursTracks session you are logged into
google.com_ga2 yearsUsed to distinguish users (Google Analytics)
google.com_gid24 hoursUsed to distinguish users (Google Analytics)
google.com_gat1 minuteUsed to throttle request rate (Google Analytics)

What Choices Do Website Visitors Have?

Users can always choose not to input their information, even though it might be needed to take advantage of TREND’s services.

Users can set browsers to block cookies or erase TREND’s cookies from their computer, though doing so may prevent some aspects of the Website from working properly.

Most browsers provide the ability for people to manage cookies to meet their needs. In some browsers, users can set up rules to control cookies on a site-by-site basis, giving users granular control over their privacy. These features enable users to disallow cookies from all sites except the trusted sites. Please note that the Website and other TREND applications do not collect personal information about your online activities over time or across third party websites or online services. Therefore, “do not track” signals broadcasted from web browsers do not apply.

Please see the list below for browser manufacturers’ help pages that relate to cookie management:

For other browsers, please consult the documentation that your browser manufacturer provides.

Users can prevent data collection by Google Analytics by clicking on the following link: https://tools.google.com/dlpage/gaoptout. This will place an opt-out cookie, which prevents the future collection of data when visiting TREND’s (or another) Website. This opt-out cookie must be stored permanently on a user’s computer. If a user deletes this opt-out cookie or it is deleted automatically via browser settings, the user will have to install this opt-out cookie again when visiting TREND’s Website in the future.

In order to exercise your rights over your data pursuant to GDPR (namely articles 15 and the following of the European Regulation 679/2016) or any similar law, please e-mail TREND at privacy@trend.community. For details, see also “Can I Access, Correct or Delete My Data?” and “GDPR (European General Data Protection Regulation)” below.

Privacy on Websites Linked from TREND’s Website

TREND may provide links to other companies on the Website. These external website addresses contain information that was published by organizations that are independent from TREND. They are used to provide additional information as a service for visitors to the Website.

TREND is not responsible for the content of the linked websites, other links that are found on such websites, or changes or updates to such websites. TREND does not review, control, or monitor the privacy practices of these websites, and this policy does not apply to them. Such websites might use cookies to collect data or use these data in a way that TREND does not. TREND is not responsible for privacy policies or information or materials on these other websites. Please read the privacy policies of these websites for information about their standards. The presence of these external links must not be seen as support for the content or opinions they contain.

Direct Communication with Visitors to the Website

TREND may use the contact information it collects through the Website’s contact forms to periodically e-mail or call users about any requested information. For example, TREND may send newsletters to all users who provided their email address for the purposes of receiving the TREND newsletter.

In addition, some of the features on the Website allow users to communicate with TREND using an online form. If the communication requests a response, TREND may send a response via e-mail. The e-mail response or confirmation may include personal information, such as names, addresses, etc. TREND cannot guarantee that these e-mails will be secure from unauthorized interception.

TREND may also contact users in cases where it is required by regulators to inform users about crucial information about products updates.

To unsubscribe from TREND’s mailing list, please press the unsubscribe button on any of TREND’s emails or contact TREND at privacy@trend.community.

Website Security

TREND secures its Website and other systems through technical and organization measures against the loss, destruction, access, amendment, distribution, or unauthorized use of data by unauthorized persons. However, no Internet transmission is ever 100% secure or error-free.

Contact Via the Website

The Website contains information that provides a means of e-mail contact to TREND, as well as other means of directly communicating with TREND. TREND automatically stores any personal data transmitted by contacting TREND by e-mail (or other electronic means). Such personal data will be stored for the purposes of responding to the inquiries, among other business purposes consistent with this policy. Use of the contact form on the Website for an inquiry is considered consent to the storage and usage of personal data. However, TREND will not use these personal data unless it has been de-identified, or TREND receives explicit consent. These personal data will not be passed on to third parties, unless TREND receives permission or as otherwise indicated in this policy (see Sharing Information with Third Parties).

DATA OWNERSHIP

Ownership of public posts or conversations from other social media platforms shared with TREND for analysis are subject to the social media platform’s privacy policy, terms of service, and other applicable policies. Participants who share data and experiences on the TREND Connect platform give their consent for TREND to analyze them, however, TREND does not own that information. TREND owns the results of the analysis, data, and output that it produces, including the Community Voice Reports, Data Explorations, Community Impact Reports, published research, and Patient Story Posters.

SHARING INFORMATION WITH THIRD PARTIES

Other than as specified below, TREND does not share raw data it collects from social platforms (such as Facebook & TREND Connect) with third parties, with the exception of instances where you have given TREND explicit consent or permission. TREND may publicly share aggregated and/or de-identified data or license those data to its clients. For example, TREND may publish its findings in peer reviewed journals, present the data at conferences, and it may license the de-identified or anonymous results of its analysis to companies that are interested in developing treatments for your communities.

TREND also does not share personal information collected through the Website with third parties, with the exception of Google through the use of Google Analytics and instances where you have given TREND explicit consent or permission. For more information about the use of Google Analytics, see Data Collection from TREND Community Website.

However, TREND does occasionally need to share personal information for the purposes of conducting its business or to comply with legal obligations. For example, under certain circumstances TREND may need to:

  • Disclose information to trusted third parties, who are bound by contractual obligations to keep personal information confidential, to support TREND’s business, and to use it only for the purposes for which it was disclosed to them;
  • Comply with any court order, law, legal process, or to respond to any government or regulatory request, including requests related to laws outside of your country of residence. This includes lawful request by public authorities, including to meet national security or law enforcement requirements;
  • Carry out TREND’s obligations and enforce TREND’s rights arising from any contracts entered into between the user and TREND;
  • Protect the rights, property, or safety of TREND, its employees, customers, or others;
  • Enforce TREND’s terms and conditions;
  • Permit TREND to pursue available remedies and/or limit the damages that TREND sustains;
  • Fulfill TREND’s recordkeeping obligations and practices;
  • Fulfill any other purpose disclosed by TREND when the user provides the information;
  • Comply with the user’s instructions or, if allowed to do so, with the user’s consent.

TREND may also need to provide collected personal information 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 TREND’s assets, whether as a going concern or as part of bankruptcy, liquidation, or similar proceeding, in which personal information held by TREND is among the assets transferred.

In instances in which you have provided specific permission for us to do so, TREND may also refer your contact information to its clients for participation in client activities, such as community meetups, capacity building workshops, patient advisory boards, clinical trials, or for other research.

TREND may also transmit information across borders as a function of its services. TREND relies on the EU-U.S. and Swiss-U.S. Privacy Shield Frameworks, as described below, when receiving personal information in the United States from certain European countries.

For questions or requests regarding TREND’s use of personal information, feel free to contact TREND at privacy@trend.community.

Notification

Because TREND’s products and services generally consist of insights from your community combined with insights from other communities, TREND cannot inform every individual community each time its data are shared. However, whenever possible TREND lets the community know if TREND data are impacting it. For example, TREND insights have helped companies obtain expedited review with the FDA, informed novel clinical trial designs, and even provided compelling proof of unmet need that led to the creation of a new pharmaceutical company. TREND is proud of these accomplishments and is excited to share this news with the communities it is helping.

DATA SECURITY

Ensuring that data are adequately protected is something that TREND takes very seriously. TREND takes several technical and procedural measures to securely transfer and store all data. For data transfers, TREND uses secure network protocols that establish an encrypted link between its server and the data source. All data are stored on state-of-the-art, private cloud servers hosted on AWS which utilizes enhanced encryption features and employs strict access management policies.

HOW LONG DOES TREND KEEP THE DATA

If you use TREND Connect or TREND Research, we keep your personal data as long as you wish to remain on our system to receive the benefits of our services. Similarly, we keep any personal data you provide to us through the Website until you ask us to erase them. Information we collect from closed social media are anonymized and thus are not personal information, as detailed above. We keep these data for as long as we believe it continues to maintain potential medical relevance for our work. We also keep publicly available social media information (such as twitter posts, as detailed above) for as long as we believe it continues to maintain potential medical relevance for our work.

CHILDREN’S PRIVACY

TREND cares about protecting the online privacy of children. TREND will not intentionally collect any personal information (such as a child’s name or e-mail address) from children under the age of 13. If you think that TREND has collected personal information from a child under the age of 13, please contact TREND at privacy@trend.community.

PRIVACY SHIELD

TREND complies with the EU-U.S. and Swiss-U.S. Privacy Shield Frameworks as set forth by the U.S Department of Commerce regarding the collection, use, and retention of personal information transferred from the European Union, the United Kingdom, and Switzerland to the United States. TREND is committed to subject all personal data received from the EU, UK, and Switzerland to the Privacy Shield Principles in reliance on the Privacy Shield. If there is any conflict between the terms in this privacy policy and the Privacy Shield Principles, the Privacy Shield Principles shall govern. The Federal Trade Commission has jurisdiction over TREND’s compliance with the Privacy Shield. To learn more about the Privacy Shield program, please visit https://www.privacyshield.gov/. To view the Privacy Shield List, please visit https://www.privacyshield.gov/list.

With respect to personal data received or transferred pursuant to the Privacy Shield Frameworks, TREND is subject to the regulatory and enforcement powers of the U.S. Federal Trade Commission.

Pursuant to the Privacy Shield Frameworks, EU, UK, and Swiss individuals have the right to obtain our confirmation of whether we maintain personal information relating to you in the United States. Upon request, we will provide you with access to the personal information that we hold about you. You may also correct, amend, or delete the personal information we hold about you. An individual who seeks access, or who seeks to correct, amend, or delete inaccurate data transferred to the United States under Privacy Shield, should direct their query to privacy@trend.community. If requested to remove data, we will respond within a reasonable timeframe.

We will provide an individual opt-out choice, or opt-in for sensitive data, before we share your data with third parties other than our agents, or before we use it for a purpose other than which it was originally collected or subsequently authorized. To request to limit the use and disclosure of your personal information, please submit a written request to privacy@trend.community

In certain situations, we may be required to disclose personal data in response to lawful requests by public authorities, including to meet national security or law enforcement requirements.

TREND’s accountability for personal data that it receives in the United States under the Privacy Shield and subsequently transfers to a third party is described in the Privacy Shield Principles. In particular, TREND remains responsible and liable under the Privacy Shield Principles if third-party agents that it engages to process personal data on its behalf do so in a manner inconsistent with the Principles, unless TREND proves that it is not responsible for the event giving rise to the damage.

COMPLAINTS, INDEPENDENT RECOURSE MECHANISM, AND ACCESS TO FREE DISPUTE RESOLUTION

TREND commits to resolve complaints about its collection or use of personal information. Individuals (including those from the EU, UK, or Switzerland) with inquiries or complaints regarding this policy, TREND’s use of personal information, or Privacy Shield, including those that wish to opt out of TREND’s use of their information, should first contact TREND at privacy@trend.community or at the following address:

1635 Market Street
Suite #1600
Philadelphia, PA 19103
Tel: 267.253.6545

TREND has further committed to refer unresolved privacy complaints under the Privacy Shield Principles to an independent dispute resolution mechanism, the BBB EU PRIVACY SHIELD. If you are an individual in the EU, UK, or Switzerland and do not receive timely acknowledgment of your complaint, or if your complaint is not satisfactorily addressed, please visit https://.bbbprograms.org/privacy-shield-complaintsfor more information and to file a complaint. This service is provided free of charge to you.

An individual has the possibility, under certain conditions, to invoke binding arbitration for complaints regarding Privacy Shield compliance not resolved by any of the other Privacy Shield mechanisms. For more information, visit: https://www.privacyshield.gov/article?id=ANNEX-I-introduction

GDPR

If you are a European Union resident or are otherwise a data subject covered by the European Union’s General Data Protection Regulation (GDPR) or similar laws in other countries, you may have certain rights in relation to your personal information.

Data Processing Outside the European Union/European Economic Area

All data gathered by TREND, including European data, are entered into a cloud-based platform run by a U.S.-based company.

European Union Data Subject Rights Pursuant to GDPR

  • Request access to your personal information (commonly known as a “data subject access request”). This enables you to receive a copy of the personal information TREND holds about you and to check that TREND is lawfully processing it.
  • Request correction of the personal information that TREND holds about you. This enables you to have any incomplete or inaccurate data TREND holds about you corrected, though TREND may need to verify the accuracy of the new data you provided.
  • Request erasure of your personal information. This enables you to ask TREND to delete or remove personal information where there is no good reason to continue processing it. You may also have the right to ask TREND to delete or remove your personal information where you have successfully exercised your right to object to processing (see below), where TREND may have processed your information unlawfully or where TREND is required to erase your personal information to comply with local law. Note, however, that TREND may not always be able to comply with your request of erasure for specific legal reasons which will be notified to you, if applicable, at the time of your request.
  • Object to processing of your personal information where TREND is relying on a legitimate interest (or those of a third party) and there is something about your particular situation which makes you want to object to processing on this ground as you feel it impacts on your fundamental rights and freedoms. You also may have the right to object where TREND is processing your personal information for direct marketing purposes. In some cases, TREND may demonstrate that it has compelling, legitimate grounds to process your information which override your rights and freedoms.
  • Request restriction of processing of your personal information. This enables you to ask TREND to suspend the processing of your personal information in the following scenarios: (a) if you want TREND to establish the data’s accuracy; (b) where TREND’s use of the data are unlawful but you do not want TREND to erase them; (c) where you need TREND to hold the data even if TREND no longer require it as you need it to establish, exercise or defend legal claims; or (d) you have objected to TREND’s use of your data but TREND needs to verify whether it has overriding legitimate grounds to use them.
  • Request the transfer of your personal information to you or to a third party (“Data Portability”). This enables you, or a third party you have chosen, to seek to have your personal information provided in a structured, commonly used, machine-readable format. Note that this right only applies to automated information which you initially provided consent for TREND to use or where TREND used the information to perform a contract with you.
  • Withdraw consent at any time where TREND is relying on consent to process your personal information. However, this will not affect the lawfulness of any processing carried out before you withdraw your consent. If you withdraw your consent, TREND may not be able to provide certain products or services to you. TREND will advise you if this is the case at the time you withdraw your consent.
  • Complain to a data protection supervisory authority about the processing of personal data by TREND. A list of Supervisory Authorities is available here:https://edpb.europa.eu/about-edpb/board/members_en.

You will not have to pay a fee to exercise any of these rights. However, TREND may charge a reasonable fee or may refuse to comply with your request if your request is repetitive or excessive. Further, TREND may not accommodate a request to access, change, or delete information if, for example:

  • There is insufficient information to confirm the individual’s identity;
  • TREND believes that doing so would violate a law, legal or other professional privilege or obligation;
  • It would cause the information to be incorrect;
  • Doing so would reveal TREND’s confidential commercial information;
  • The burden or expense of providing access would be disproportionate to the risks to your privacy in that instance;
  • Where the rights or important interests of others would be violated;
  • It is likely to interfere with the safeguarding of important countervailing public interests (i.e. national security, defense, or public security);
  • The personal information is being process solely for research or statistical purposes;
  • It would interfere with the execution of enforcement of the law or with private causes of action, including the prevention, investigation or detection of offenses or the right to a fair trial;
  • It would prejudice the confidentiality necessary for monitoring, inspection, or regulatory functions connected with sound management, or in future or ongoing negotiations.
  • It would prejudice employee security investigations or grievance proceedings or in connection with employee succession planning and corporate re-organizations;
  • The individual is participating in a “blinded” study;
  • The information is public record information and is not combined with other personal information;
  • If TREND is not legally obligated to so.

Please note that much of the data TREND collects are de-identified, making it non-personal information. Therefore, TREND may not have a way of linking those data back to you. As a consequence, TREND may not be able to provide access to, correct, or delete your data, as TREND may not be able to know whether they are actually your data.

You may also access or correct your privacy preferences by sending TREND an email with your name, address, and email address (if different from the one you use to contact us) at privacy@trend.community.

TREND tries to respond to all legitimate requests in a timely manner. Occasionally, it may take TREND longer if your request is particularly complex or you have made a number of requests. In this case, TREND will notify you and keep you updated. TREND may also need to contact you about your request to verify your identity, confirm certain information, or clarify the request before TREND can fulfill the request.

If you are a European Union resident or are otherwise a data subject covered by GDPR or a similar law, and would like to exercise these rights, or if you have questions about your rights please contact TREND at privacy@trend.community or use TREND’s contact details listed above.

INFORMATION FOR CALIFORNIA RESIDENTS

California residents may have certain rights regarding the data about them held by TREND. If you wish to inquire about these rights or wish to exercise them, please email us at privacy@trend.community.

CHANGES TO PRIVACY POLICY

It is TREND’s policy to post any changes it makes to its privacy policy on this page with a notice that the privacy policy has been updated on the Website’s home page. If material changes are made as to how TREND treats users’ personal information, TREND will notify TREND Connect and TREND Research users/participants for which there is an e-mail address on record and/or through a notice on the Website’s home page. The date the privacy policy was last revised is identified at the top of the page. TREND Connect and TREND Research users/participants are responsible for ensuring that TREND has an up-to-date, active, and deliverable e-mail address, and for periodically visiting the Website and this privacy policy to check for any changes.

Social media analytics is the process of gathering and analyzing data from social networks Marshall Sponder and Gohar F. Khan define it as, “the art and science of extracting valuable hidden insights from vast amounts of semi-structured and unstructured social media data to enable informed and insightful decision making” in Digital Analytics for Marketing.

TREND has engaged The Western Institutional Review Board (www.wirb.com), which determined that TREND’s studies are exempt under 45 CFR § 46.104(d)(4) because the aim of the research is to collect de-identified information from social media posts to better understand disease burden, disease management strategies, quality of life, and unmet needs of patient communities living with rare and chronic diseases. The research is not FDA-regulated nor classified, does not involve prisoners, and is consistent with the ethical principles of the Belmont Report. This means that consent from individual group members is not required, only permission from a group administrator.