Privacy Policy

Last Updated: January 20, 2021.

Protecting your privacy is important to us. With this in mind, we're providing this Privacy Policy to explain how your information is collected, used, and disclosed by TrialSpark, Inc. ("TrialSpark", "we", or "us") in connection with our program (the "Program") that connects patients to researchers, trial sponsors, and pharmaceutical companies ("Researchers") that conduct research studies and clinical trials ("Studies") appropriate to their diagnoses or conditions. This Privacy Policy ("Policy") applies to Personal Information that is Managed by TrialSpark in the course of our business, including on TrialSpark websites, mobile applications, and other online offerings (together with any and all future online offerings operated by or on behalf of TrialSpark, the "Services"), e.g. the participants in the Program who are patients or supporters of patients. Except as otherwise indicated herein, "you" as used herein refers to all types of users located in the United States. This Policy is intended to meet requirements in the United States.

TrialSpark's Services may contain links to other websites for your convenience and information. TrialSpark does not control Third-Party (defined below) websites or their privacy practices, which may differ from those set out in this Privacy Policy, even if they are accessible through our Program or Services. TrialSpark does not endorse or make any representations about Third-Party websites. Any Personal Information you choose to give to unrelated Third Parties is not covered by this Policy. TrialSpark encourages you to review the privacy policy of any company or website before submitting your Personal Information. Some Third Parties may choose to share their users' Personal Information with TrialSpark; that sharing is governed by that company's privacy policy, not this Privacy Policy.

By providing information through the Program, you signify that you have read, understood and agree to the collection, storage, use and disclosure of your personal information as described in this Privacy Policy.

Clinical Trial Data

Personal Information collected as part of participation in a clinical study will be additionally governed by that study's Informed Consent Form ("ICF") and any associated privacy policies.

Revisions to this Privacy Policy

Any information we collect is covered by the Privacy Policy in effect at the time such information is collected. We may revise this Privacy Policy from time to time. If we make any material changes to this Privacy Policy, we'll notify you of those changes by sending you an email or other notification, and we'll update the "Last Updated Date" above to indicate when those changes will become effective. TrialSpark encourages you to review this Policy periodically to remain informed about how TrialSpark is using and protecting Personal Information and to be aware of any policy changes. By your continued relationship with TrialSpark after the posting or notice of any amended Privacy Policy, you indicate your understanding and acknowledgement of the amended Privacy Policy and consent to the collection and Managing of your Personal Information as provided in the amended Privacy Policy. Any changes to this Policy take effect immediately after being posted or otherwise provided by TrialSpark.

Collection and Use of Information

The types of Personal Information we may collect (directly from you or from Third-Party sources) and our privacy practices depend on the nature of the relationship you have with TrialSpark and the requirements of applicable law. We endeavor to collect only that information which is relevant for the purposes of Managing. Below are the legal bases and some of the ways we collect information and how we use it.

Information Collected or Received from You

TrialSpark collects Personal Information regarding its current, prospective, and former Researchers, patients, Employees, users, visitors, and guests.

Our primary goals in collecting information are to provide and improve our Program, to administer your use of the Program (including your account, if you are an account holder), and to enable you to enjoy and easily navigate our Program.

The types of personal information we collect from you depends on the circumstances in which the information is collected. The most common types of information we collect and the ways we collect it are set out below:

  1. Account Information. If you register for the Program and fill out a screening form ("Screening Form"), we'll collect certain information that can be used to identify you, such as your name, email address, postal address, phone number, economic, cultural or social identification, sexual behavior or preference, racial or ethnic origin, and other Personal Information you may choose to provide. We may use this information for the purpose of outbound clinical trial site. If you are a parent or legal guardian, you may also register for the Program and fill out a Screening Form on behalf of your child ("Child"). Any personally identifiable information you submit on behalf of a Child will be deemed Personal Information for the purposes of this Privacy Policy.

  2. Health Information. As part of the Program, we may send you health-related surveys to collect information including, but not limited to, your or your Child's age, gender, date of birth, smoking status, height, weight, number of children, diagnoses, medical conditions, medications, medical history and other healthcare-related information. Any such information collected from you in connection with a survey or Screening Form is referred to as "Health Information."

You acknowledge and agree that we may use the Health Information to create de-identified or aggregated data that does not identify you or your Child ("De-Identified Data"). We may use and share De-Identified Data for research and analysis purposes, to improve the Program or to promote the Program.

  1. Third-party Patients. If you submit Health Information or personally-identifiable information ("PII") on behalf of your Child, you represent and warrant you have all rights necessary to do so and to permit TrialSpark to use such PII and Health Information as set forth in this Privacy Policy.

  2. Information Collected Using Cookies and other Web Technologies. Like many website owners and operators, we use automated data collection tools such as Web Beacons (defined below) to collect certain information.

"Cookies" are small text files that are placed on your device by a web server when you access our Program. We may use both session Cookies and persistent Cookies to identify that you've logged in to the Program and to tell us how and when you interact with our Program. We may also use Cookies to monitor aggregate usage and web traffic routing on our Program and to customize and improve our Program. Unlike persistent Cookies, session Cookies are deleted when you log off from the Program and close your browser. Although most browsers automatically accept Cookies, you can change your browser options to stop automatically accepting Cookies or to prompt you before accepting Cookies. Please note, however, that if you don't accept Cookies, you may not be able to access all portions or features of the Program. Some third-party services providers that we engage (including third-party advertisers) may also place their own Cookies on your device. Note that this Privacy Policy covers only our use of Cookies and does not include use of Cookies by such third parties.

"Web Beacons" (also known as web bugs, pixel tags or clear GIFs) are tiny graphics with a unique identifier that may be included on our Program for several purposes, including to deliver or communicate with Cookies, to track and measure the performance of our Program, to monitor how many visitors view our Program, and to monitor the effectiveness of our advertising. Unlike Cookies, which are stored on the user's device, Web Beacons are typically embedded invisibly on web pages (or in an e-mail).

  1. Information Related to Use of the Program. Our servers automatically record certain information about how a person uses our Program (we refer to this information as "Log Data"), including both account holders and non-account holders (either, a "User"). Log Data may include information such as a User's Internet Protocol ("IP") address, browser type, operating system, the web page that a User was visiting before accessing our Program, the pages or features of our Program to which a User browsed and the time spent on those pages or features, search terms, the links on our Program that a User clicked on and other statistics. We use Log Data to administer the Program and we analyze (and may engage third parties to analyze) Log Data to improve, customize and enhance our Program by expanding the features and functionality and tailoring them to our Users' needs and preferences. We may use a person's IP address to generate aggregate, non-identifying information about how our Program is used.

  2. Information Sent by Your Mobile Device. We collect certain information that your mobile device sends when you use our Program, like a device identifier, user settings and the operating system of your device, as well as information about your use of our Program.

  3. Location Information. When you visit our website, we may collect and store information about your location by converting your IP address into a rough geo-location or by accessing your mobile device's GPS coordinates or coarse location if you enable location services on your device. We may use location information to improve and personalize our Program for you. If you do not want us to collect location information, you may disable that feature on your mobile device.

Additionally, in some cases, TrialSpark is obligated to collect certain Personal Information (defined below) to comply with regulatory requirements, including information relating to adverse effects you may have experienced when using our Services.

You can choose not to provide information to us directly, but some of this information is required to participate in some of the Services, and some Services may not function properly if you choose not to provide the information requested.

Information We Obtain from Other Sources.

We may receive information about you from other sources, including through Third-Party services and organizations. TrialSpark may indirectly collect information about your health condition, diagnosis, and treatment from your healthcare professional, but only where your healthcare professional has obtained your consent to disclose that information to us, as required by law. TrialSpark may collect various information from healthcare professionals as part of marketing activities to healthcare professionals, including first name, last name, age, gender, home address, home phone number, medical specialization, professional qualifications, license number and scientific society membership number.

TrialSpark may also collect information about you from Third-Party sources to supplement information provided by you. This supplemental information allows us to verify information that you have provided to TrialSpark and to enhance our ability to provide you with information about our business, products, and services. TrialSpark's agreements with these Third-Party sources typically limit how TrialSpark may use this supplemental information

How TrialSpark Collects Personal Information

You may provide Personal Information directly to TrialSpark through interacting with the Services, participating in surveys, during events, on telephone conversations, and requesting products, Services, or information. As you navigate the Services, certain passive information may also be collected about your visit, including through cookies and similar technologies as discussed above.

How TrialSpark Uses Personal Information

We acquire, hold, use, and Manage Personal Information based on the legal grounds and for the legitimate business purposes outlined in this Policy, including:

  1. To Provide Services or Information Requested: TrialSpark may use information about you to fulfill requests for Services or information, including information about potential or future Services, including to:

    • Generally manage Individual (as defined below) information and accounts;
    • Respond to questions, comments, and other requests;
    • Provide access to certain areas, functionalities, and features of TrialSpark's Services;
    • Allow you to register for events and Programs.

  2. Administrative Purposes: TrialSpark may use Personal Information about you for its administrative purposes, including to:

    • Measure interest in TrialSpark's Services;
    • Develop new Services;
    • Ensure internal quality control;
    • Verify Individual identity;
    • Communicate about Individual accounts and activities on TrialSpark's Services and systems, and, in TrialSpark's discretion, changes to any TrialSpark policy;
    • Process payment for Services purchased;
    • Manage applications and transactions;
    • Comply with regulatory requirements, including collecting and using information relating to adverse effects you may have experience when using our Services;
    • Prevent potentially prohibited or illegal activities.

  3. Marketing TrialSpark Services: TrialSpark may use Personal Information to provide you with materials about Services that may be of interest, including new content or Services. TrialSpark may provide you with these materials by phone, postal mail, facsimile, email, or other means of communication as permitted by applicable law. Such uses include:

    • To tailor content, advertisements, and offers;
    • To notify you about Services that may be of interest to you;
    • To provide Services to you and our Researchers;
    • For other purposes disclosed at the time that Individuals provide Personal Information; or
    • Otherwise with your consent. You may contact us at any time to opt out of the use of your Personal Information for marketing purposes, as further described below.

  4. Research and Development: TrialSpark may use Personal Information to create non-identifiable information that we may use alone or in the aggregate with information obtained from other sources, in order to help us to optimally deliver our Services or develop new Services.

  5. Information Submitted Via Services. You agree that TrialSpark is free to use the content of any communications submitted by you via the Services, including any ideas, inventions, concepts, techniques, or know-how disclosed therein, for any purpose including developing, manufacturing, and/or marketing Services. TrialSpark will not release your name or otherwise publicize the fact that you submitted materials or other information to us unless: (a) you grant us permission to do so; (b) we first send notice to you that the materials or other information you submit to a particular part of a Service will be published or otherwise used with your name on it; or (c) we are required to do so by law.

  6. Sharing Content with Friends or Colleagues. TrialSpark's Services may offer various tools and functionalities. For example, TrialSpark may provide functionality on its Services that will allow you to forward or share certain content with a friend or colleague. Email addresses that you may provide for a friend or colleague will be used to send your friend or colleague the content or link you request, but will not be collected or otherwise used by TrialSpark or any other Third Parties for any other purpose.

  7. Information Anonymized or Aggregated. Including the analytics information discussed below, TrialSpark may use and share anonymized or aggregated information within the TrialSpark group of companies or with Third Parties for public health, research, analytics, or any other legally permissible purpose.

  8. Other Uses. TrialSpark may use Personal Information for other purposes disclosed to you at the time you provide Personal Information or with your consent.

Research/Survey Solicitations

From time to time, TrialSpark may perform research (online and offline) via surveys. We may engage Third-Party service providers to conduct such surveys on our behalf. All survey responses are voluntary, and the information collected will be used for research and reporting purposes to help us better serve Individuals by learning more about their needs and the quality of the Services we provide. The survey responses may be utilized to determine the effectiveness of our Services, various types of communications, advertising campaigns, and/or promotional activities. If an Individual participates in a survey, the information given will be used along with that of other study participants. We may share anonymous Individual and aggregate data for research and analysis purposes.

Information that We Share with Third Parties

We will not share any Personal Information or Health Information that we have collected from or regarding you except as described below:

  1. Information Shared with Our Researchers. We may share the Personal Information and Health Information you submit with the Researchers who have contracted with us to have access to our database. The Researchers have access to such information only for the purposes of selecting candidates for and conducting the Studies.

  2. Information Shared with Our Services Providers. We may engage third-party services providers to work with us to administer and provide the Program. These third-party services providers have access to the Personal Information and Health Information you submit only for the purpose of performing services on our behalf and, they are expressly prohibited from disclosing or using such information for any other purpose.

  3. Information Shared with Third Parties. We may share aggregated information and non-identifying information, including, without limitation, the De-Identified Data, with Third Parties for research and analysis, demographic profiling, promotion of the Program, and other similar purposes.

  4. Interest-Based Advertising. Through our Services, TrialSpark may allow Third-Party advertising partners to set tracking tools (e.g., cookies) to collect information regarding your activities (e.g., your IP address, page(s) visited, time of day). We may also share such de-identified information we have collected with Third-Party advertising partners. These advertising partners may use this information (and similar information collected from other websites) for purposes of delivering targeted advertisements to you when you visit non-TrialSpark related websites within their networks. This practice is commonly referred to as "interest-based advertising" or "online behavioral advertising."

  5. Information Shared with Web Analytics Services Providers.

    • Google We utilize Google Analytics, a service provided by Google, Inc. ("Google"), to gather information about how users engage with our website and Services. For more information about Google Analytics, please visit www.google.com/policies/privacy/partners/. You can opt out of Google's collection and processing of data generated by your use of the Services by going to http://tools.google.com/dlpage/gaoptout.

    • Facebook. We may use certain tools offered by third parties (e.g., Facebook) to enable them to collect or receive information about actions users take on our Site and elsewhere on the internet through use of Cookies, Web Beacons and other storage technologies. These third parties may use the data that they collect to provide measurement services, targeted ads and other services. For more information regarding the collection and use of such information by Facebook, please see the Facebook Data Policy, available at: https://www.facebook.com/policy.php.

    • Opt-out of Ad Tracking. You can opt out of the collection and use of your information for ad targeting by going to http://www.aboutads.info/choices or http://www.youronlinechoices.eu/ to limit collection through our website.

  6. Information Disclosed in Connection with Business Transactions. Information that we collect from our users, including Personal Information and Health Information, is considered to be a business asset. Thus, if we are acquired by a third party as a result of a transaction such as a merger, acquisition or asset sale or if our assets are acquired by a third party in the event we go out of business or enter bankruptcy, some or all of our assets, including your Personal Information and Health Information, may be disclosed or transferred to a third party acquirer in connection with the transaction.

  7. Information Disclosed for Our Protection and the Protection of Others. We cooperate with government and law enforcement officials or private parties to enforce and comply with the law. We may disclose any information about you to government or law enforcement officials or private parties as we, in our sole discretion, believe necessary or appropriate: (i) to respond to claims, legal process (including subpoenas); (ii) to protect our property, rights and safety and the property, rights and safety of a third party or the public in general; and (iii) to stop any activity that we consider illegal, unethical or legally actionable activity.

TrialSpark has executed appropriate contracts with the service providers that prohibit them from using or sharing Personal Information except as necessary to perform the contracted services on our behalf or to comply with applicable legal requirements.

Your Choices

We offer you choices regarding the collection, use and sharing of the Personal Information and Health Information you submit and we will respect the choices you make. Please note that if you decide not to provide us with the Personal Information or Health Information that we request, you may not be able to access or participate in all of the features of the Program.

Where you have consented to TrialSpark's Managing of your Personal Information, you may withdraw that consent at any time and opt out to further Managing by following the instructions in this section.

Additionally, before we use Personal Information for any new purpose not originally authorized by you, we will provide information regarding the new purpose and give you the opportunity to opt out.

Prior to disclosing Sensitive Data to a Third Party or Managing Sensitive Data for a purpose other than its original purpose or the purpose authorized subsequently by the Individual, TrialSpark will endeavor to obtain each Individual's explicit (opt-in) consent. Where consent of the Individual for the Managing of Personal Information is otherwise required by law or contract, TrialSpark will comply with the law or contract.

  1. Opt-Out. We may periodically send you free newsletters and e-mails that directly promote our Program. When you receive such promotional communications from us, you will have the opportunity to "opt-out" by following the unsubscribe instructions provided in the e-mail you receive. We do need to send you certain communications regarding the Program and you will not be able to opt out of those communications -- e.g., communications regarding updates to our Terms of Service or this Privacy Policy, without opting entirely out of the Program or Services.

  2. Advertising Choices. If TrialSpark participates in interest-based advertising, an opportunity to opt out of such interest-based advertising will be provided through an AdChoices link. Advertisements on Third-Party websites that contain the AdChoices link and that link to this Policy may have been directed to you based on anonymous, non-Personal Information collected by advertising partners over time and across websites. These advertisements provide a mechanism to opt-out of the advertising partners' use of this information for interest-based advertising purposes. Even if you opt out through AdChoices, we may still collect and use non-Personal Information regarding your activities on our Services and/or information from the advertisements on Third-Party websites for non-interest-based advertising purposes, such as to determine the effectiveness of the advertisements.

  3. Modifying Your Information. You can access and modify the Personal Information and Health Information submitted in connection with a Screening Form by emailing support@trialspark.com. If you want us to delete your Personal Information and Health Information, please contact us at support@trialspark.com with your request. We'll take steps to delete your information as soon we can, but some information may remain in archived/backup copies for our records or as otherwise required by law.

Responding to Do Not Track Signals

Our website does not have the capability to respond to "Do Not Track" signals received from various web browsers.

The Security of Your Information

We take reasonable administrative, physical and electronic measures designed to protect the information that we collect from or about you (including your Personal Information and Health Information) from unauthorized access, use or disclosure. When you enter sensitive information on our forms, we encrypt this data using SSL or other technologies. Please be aware, however, that no method of transmitting information over the Internet or storing information is completely secure. Accordingly, we cannot guarantee the absolute security of any information.

Links to Other Sites

Our Program may contain links to websites and services that are owned or operated by Third Parties (each, a "Third-party Service"). Any information that you provide on or to a Third-party Service or that is collected by a Third-party Service is provided directly to the owner or operator of the Third-party Service and is subject to the owner's or operator's privacy policy. We're not responsible for the content, privacy or security practices and policies of any Third-party Service. To protect your information, we recommend that you carefully review the privacy policies of all Third-party services that you access.

International Transfer

Your Personal Information and Health Information may be transferred to, and maintained on, computers located outside of your state, province, or other governmental jurisdiction where the privacy laws may not be as protective as those in your jurisdiction. All Personal Information collected via or by TrialSpark will be stored in the United States, on our servers, on the servers of our affiliates or the servers of our service providers. Your Personal Information may be accessible to law enforcement or other authorities pursuant to a lawful request. By providing information to TrialSpark, you consent to the storage of your Personal Information in these locations.

Data Retention

TrialSpark retains the Personal Information we receive as described in this Policy for as long as you use our Services or as necessary to fulfill the purpose(s) for which it was collected, provide our Services, resolve disputes, establish legal defenses, conduct audits, pursue legitimate business purposes, enforce our agreements, and comply with applicable laws. We will retain your data for the duration of the trial on active databases. Your data will be de-identified after the duration of the trial.

Redress/Compliance and Accountability

If after reviewing this Policy, you would like to submit a request or you have any questions or privacy concerns, please contact: TrialSpark Support at support@trialspark.com, or at 16 East 34th Street, Floor 10, New York, NY 10016. TrialSpark will address your concerns and attempt to resolve any privacy issues in a timely manner.

Our Policy Toward Children

Our Services are not specifically directed to minors and we do not knowingly collect Personal Information, including Health Information from children under 13 (and, where applicable, in certain jurisdictions under the age of 16) except where that Personal Information is provided by an authorized parent or guardian and/or pursuant to an authorized parent's or guardian's consent, such as through an ICF. If we learn that we have collected Personal Information or Health Information directly from a child under 13 (and, where applicable in certain jurisdictions, under the age of 16) without any necessary consent from an authorized parent or guardian, we will take steps to delete such information from our files as soon as possible.

Questions

Please contact us at support@trialspark.com if you have any questions about our Privacy Policy.

Additional Definitions

"Employee" refers to any current, temporary, permanent, prospective or former employee, director, contractor, worker or retiree of TrialSpark or its subsidiaries worldwide.

"Manage", "Managed" or "Managing" means any operation which is performed upon Personal Information, whether or not by automatic means, such as collection, recording, organization, structuring, storage, adaptation or alteration, retrieval, consultation, use, disclosure by transmission, dissemination or otherwise making available, alignment or combination, restriction, erasure, or destruction.

"Personal Information" is any information relating to an Individual, including Internet Protocol addresses, information contained in cookies, and navigational data. This type of information is used for the purposes of gathering data to provide improved administration of our Services, and to improve the quality of your experience when interacting with our Services.

"Third Party" is any company, natural or legal person, public authority, agency, or body other than the Individual or TrialSpark.