Last Updated Date: May 2024

1. GENERAL

Responsum, Inc. (“Responsum”, “we”, or “us”) offers clinical trial participant recruitment services (the “Services”). This Privacy Policy sets out how we use and protect your Personal Information and your rights and choices with regard to that information. This Privacy Policy applies to Personal Information collected by or on behalf of Responsum, including information collected through our website https://responsumhealth.com and mobile versions of our websites (the “Site”) or anywhere else we display this Privacy Policy. It also applies to information collected by email, phone, or other offline communication mechanisms. 

To the extent you are a parent, guardian, caretaker, or other authorized representative of another individual (such as a minor) and register for the Services on that person’s behalf, you represent that you are legally authorized to take such actions and to disclose the individual’s Personal Information. In such case, statements in this Privacy Policy directed to registered users of the Services apply to the person whose Personal Information you provided.

By visiting the Site or using the Services, you accept and consent to the terms of our Privacy Policy in effect at the time of your visit or use.

Your personally identifiable information is kept confidential and protected in our databases unless we are required to do so by law. This Privacy Policy describes when and how this information may be shared. You have the right at any time, to modify or delete your personal profile and all data. With your consent, we may contact you from time to time about clinical studies that match your profile and search filters, to offer clinical study opportunities as they come online and available, introduce new products, to share educational materials, to solicit participant stories are studies are completed and for other reasons that underpin the helping of participants to find and access treatment options in development.

Responsum Health may contact you via secured electronic platforms, such as email, SMS text or social media .  Responsum Health does not sell, share or exchange personally identifiable information via social media channels or applications.

2. WHAT WE MEAN BY “PERSONAL INFORMATION”

For purposes of this Privacy Policy, “Personal Information” means information that directly or indirectly identifies you or can be used to identify you as an individual.

3. WHAT PERSONAL INFORMATION DO WE COLLECT?

3.1. Information You Provide to Us

When you use the Site or otherwise communicate or interact with us through the Services, we collect information that you provide to us directly. For example, we collect information in the following circumstances: when you contact us; when you register for and engage with our Services; and when you otherwise communicate with us. Occasionally, you may choose whether or not to provide or disclose Personal Information in connection with your use of the Services. If you choose not to provide the Personal Information we request, you may still visit and use parts of the Site, but may be unable to access or use certain features, options, programs, and services of the Site. In addition, as we need certain Personal Information for the performance of the Services, the consequence of not providing such information might be that the Services cannot be provided as requested.

The Personal Information you provide to us may include the following:

• Information you provide via email, through our ‘Pre-screening’ pages, or using contact details listed on various parts of the Site, including your name, e-mail, phone number, and any other information you decide to provide;
• In connection with the Services, information you provide in order to sign up for a clinical trial, including your name, age, e-mail address, health conditions relevant to the clinical trial opportunities, or any other information you decide to provide to us in connection with the Services; and
• We may also collect any other information you may want to share with us. Moreover, if you contact us, a record of such correspondence may be kept.

A subset of personal information we may collect “sensitive personal information,” as defined by applicable law, and includes health conditions and other medical record information relevant to the clinical trial opportunities.  The business or commercial purpose for which it is collected is for our operational purposes and performing services you request. When applicable, we will obtain your consent or authorization before accessing such information, in accordance with applicable law.

In addition, where you decide to participate in a clinical trial, then any information you provide as a participant in that trial is subject to the informed consent form that you complete.

3.2. Information Collected Automatically

Certain information is collected automatically on the Site by means of various software tools. We have a legitimate interest in using such information to assist in log-in, systems administration purposes, information security and abuse prevention, to track user trends, and to analyze the effectiveness of the Site. Alone or in combination with other information, such automatically collected information may constitute Personal Information. Some of our service providers (described in Section V., below) may use cookies or other methods to gather information regarding your use of the Site and to track your activities over time and across sites to provide advertising services to us.

• Log Files On the Site. The information inside the log files includes internet protocol (“IP”) addresses, type of browser, Internet Service Provider (“ISP”), date/time stamp, referring/exit pages, clicked pages and other information your browser may send to us about your use of the Site.
• Cookies. We use cookies to make interactions with the Site easy and meaningful. When you visit the Site, our servers may send a cookie to your computer. We may use cookies that are session-based and persistent. Session cookies exist only during one session. They disappear from your computer when you close your browser software or turn off your computer. Persistent cookies remain on your computer after you close your browser or turn off your computer. Please note that if you disable your web browser’s ability to accept cookies, you will be able to navigate the Site, but you may not be able to use all of the features of the Site. The following sets out how we may use different categories of cookies and your options for managing cookie settings:

You may at any time cancel the use of cookies on our website by modifying the configuration of the web browser used, as follows:

• • Chrome: https://support.google.com/chrome/answer/95647?hl=en
  • Internet Explorer: https://support.microsoft.com/en-us/help/17442/windows-internet-explorer-delete-manage-cookies
  • Firefox: https://support.mozilla.org/en-US/kb/enable-and-disable-cookies-website-preferences
  • Safari: https://support.apple.com/guide/safari/manage-cookies-and-website-data-sfri11471/mac

• Analytics. The Site also uses Google Analytics. By using cookies, Google Analytics collects and stores data such as time of visit, pages visited, time spent on each page of the Site, the IP address, and the type of operating system used in the devices used to access the Site. By using a browser plugin available at http://www.google.com/ads/preferences/plugin/ provided by Google, you can opt out of Google Analytics.

3.3. Do-Not-Track Signals

Some browsers have a “Do-Not-Track” feature that lets you tell websites that you do not want to have your online activities tracked. When you choose to turn on the Do-Not-Track setting in your browser, your browser sends a signal to websites, analytics companies, ad networks, plug-in providers, and other web services that you may encounter while browsing the Internet, instructing them to stop tracking your activity via cookies or other online tracking technologies. While we continue to evaluate this evolving technology to implement such capabilities, the Site does not currently respond to browser based Do-Not-Track signals. For information regarding Do-Not-Track and how to enable this setting if available on your devices, please see https://allaboutdnt.com.

3.4. Information Received from Third Parties

We may also obtain data from third-party sources such as a registrant’s authorized representative or guardian, our customers or vendors such as data providers.

3.5 Consent

When you register for a Responsum Health service or receive information, you provide consent for us to collect personally identifiable information. At this time we explain what you are registering to receive and how we plan to use your personal information. You may at any time discontinue your consent by ‘Right to Delete’ and ‘Right to Opt Out of Sale or Sharing’. If Responsum Health propose a secondary use that is different from which the data was initially collected, we will offer an effective way to opt out of the secondary use.

3.6 Updating Your Personal Information

Where possible you should update the information you have provided us when a change occurs including, your mailing or email address, or a change in your medical conditions.

4. PURPOSES FOR OUR COLLECTION AND USE OF PERSONAL INFORMATION

4.1. General Uses

We may use Personal Information obtained through the Services in the following ways:

• To provide the Services;
• To provide, analyze, administer, develop, and improve the Site or our Services;
• To contact you in connection with the Site, our Services, and notifications, services, programs or offerings for which you may have registered;
• To send you updates and promotional materials for which you have registered;
• To assess whether a clinical trial is suited for you and to bring you in contact with principal investigators, clinical research sites or clinical trial service providers, using solely for these purposes the health information that is provided to us based on your consent;
• To contact you regarding other treatment options, refer you to other trial sites and other related purposes;
• To identify and authenticate your access to the parts of the Site and Services that you are authorized to access;
• For our legitimate interests of documenting and managing our internal administration;
• To protect the rights and/or our property and to ensure the technical functionality and security of the Site or Services; and
• To comply with applicable laws and for our legitimate purposes of protecting our legal rights, in connection with legal claims or enforcement of contracts, and for compliance, regulatory, and investigative purposes. This may include sharing the Personal Information with third parties, such as governmental authorities or law enforcement officials, subject to applicable law.

5. WHO DO WE SHARE PERSONAL INFORMATION WITH?

We may disclose Personal Information you provide to us or that we collect automatically on the Site or in and through the Services with the following categories of third parties:

• Service providers, such as data storage service providers, marketing service providers, and communications service providers that help us operate our business or provide services on our behalf;
• When you apply to participate in a clinical trial, we may share Personal Information about you with principal investigators, clinical research sites, and clinical trial service providers that are relevant to you;
• If you are matched to a clinical trial, your Personal Information may be de-identified/pseudonymized/ anonymized and shared with sponsors of the potentially matching clinical studies.
• Public authorities, such as law enforcement, if we are legally required to do so or if we need to for national security or to protect our rights or the rights of third parties;
• Our subsidiaries and affiliates for our business operations; and
• A subsequent owner, co-owner or operator of the Site and their advisors in connection with a corporate merger, consolidation, restructuring, the sale of substantially all of our stock and/or assets, or in connection with bankruptcy proceedings, or other corporate reorganization, in accordance with this Privacy Policy.

Third parties that receive personal data from Responsum Health are required to adopt substantially similar standards to those required by Responsum Health. The disclosed Personal Information may only be used specifically for the execution of the clinical study or as otherwise authorized by Responsum Health.

Responsum Health must report any suspected or directly identified adverse events to the Sponsor’s Medical Safety team. In these instances, you are accepting that the Sponsor may contact your doctor about the reported suspected adverse event. All information received by the Sponsor’s Medical Safety team is treated in confidence and in accordance with Privacy laws and the participants information is de-identified. Adverse Event (AE) reports may be forwarded to the relevant health authorities. Responsum Health will comply with all the relevant laws relating to mandatory reporting of AE in every jurisdiction it operates.

6. COMMUNICATION PREFERENCES

Once you register for our Services via pre-screening forms, you may be contacted at the phone number you provide including wireless number (if provided), by a representative of Responsum or its database administrator. You may opt out of these calls or texts at any time by sending an email to info@responsumhealth.com or by calling (202) 480-9607. If you would like to stop receiving text messages, you may text STOP in reply to any messages that you receive.

With your consent (unless otherwise permitted by applicable law) we use the Personal Information you provide us to send you information on our products and Services and other information based on the interests that you have indicated to us. You have the right to opt out of getting those messages. If you do not wish to receive these messages, click the unsubscribe link in your email. Please note that these selections are not permanent; they may be changed in the event you register for other Services or communications and consent to receive marketing messages. Please also note that even if you unsubscribe from commercial email messages, we may still email you non-marketing emails related to your account or the Services for which you have registered. You may also email us at info@responsumhealth.com for assistance.

7. THIRD-PARTY PRACTICES

The Site may contain links to other sites, which are not owned or operated by us or our affiliates. We provide such links only as a convenience, and the inclusion of a link on the Site does not imply our endorsement of the linked site. Other sites may also reference or link to our Site. If you provide any Personal Information through a third-party website, your transaction will occur on such third party’s website (not our Site), and the Personal Information you provide will be collected by, and controlled by the privacy policy of, that third party. We are not responsible for the privacy practices or the content of such third-party websites, including such websites’ use of any Personal Information that you provide to them.

8. NOTICE TO CERTAIN RESIDENTS

Depending on your state of residency, the information and rights in this section may apply to you. Please contact us at info@responsumhealth.com if you have any questions about this Privacy Policy, including this section, or if you would like a printed copy of this Privacy Policy. You may also print a copy of this Privacy Policy by selecting the “Print” button in your web browser.

8.1. How We Collect and Use Personal Information

In accordance with various U.S. state laws such as the California Consumer Privacy Act of 2018 (“CCPA”), as amended by the California Privacy Rights Act (“CPRA”), the Colorado Privacy Act (including its implementing regulations) (“CPA”), Connecticut’s Act Concerning Personal Data Privacy and Online Monitoring (“CTDPA”), the Virginia Consumer Data Protection Act of 2021 (“VCDPA”), and the Utah Consumer Privacy Act (“UCPA”), this section describes the Personal Information we collected about California residents in the last 12 months, the sources of that information, our business or commercial purposes for collecting the information, and the third parties with whom we shared that information.

We collected the information listed in the table below from the following sources: directly from you, your authorized personal representative, or from third parties (such as medical providers or other entities you have authorized to share your Personal Information with us).

For purposes of this Privacy Policy, when we use the term “third party,” we mean entities that are not service providers or contractors providing services on our behalf and that are not entities with whom you interact directly.

In the last 12 months, we have collected and, disclosed for a business purpose each of the categories of Personal Information noted in the table below, to the categories of recipients listed. We do not share your personal information for cross-context behavioral advertising or sell your personal information for monetary or other consideration and have not done so in the last 12 months.

Service providers and contractors, law enforcement, governmental authorities or agencies, clinical trial investigators and sites or their staff and agents

Please refer to the section of this Privacy Policy above-titled PURPOSES FOR OUR COLLECTION AND USE OF PERSONAL INFORMATION for descriptions of the business or commercial purposes for which we collected the information.

8.2. Your Rights and How to Exercise Them

Under various U.S. state privacy laws residents of certain states have certain rights with regard to their Personal Information. Those rights may only apply in certain circumstances and may be subject to limitations or exceptions. In addition, under the Australian Privacy Act if you believe we have breached the Privacy Act, or you wish to make a complaint about the way we have handled your personal information, you can contact us via email: info@responsumhealth.com and include ‘Complaint Request’ in the subject line of your message (see Right to Complaint below). Please include your name, email address and/or telephone number and clearly describe your complaint.  We will acknowledge your complaint and respond to you regarding your complaint within a reasonable period of time. If you think we have failed to resolve the complaint satisfactorily we will provide you with information about the further steps you can take. A summary of those rights is provided below as well as information on how to exercise your rights. Please note that we will require certain identifying information about you as necessary for us to verify your request in accordance with applicable law.

• Right to Know: You have the right to ask us to tell you the categories of Personal Information we collected about you, the categories of sources from which the Personal Information was collected, the business or commercial purposes for which we collected, sold or disclosed that information, and the categories of third parties to whom we disclosed the information in the last 12 months. To exercise this right, please email your request to info@responsumhealth.com and include “Disclosure Request” in the subject line of your message.
• Right to Access (Right to Know Specific Pieces of Information): You have the right to request access to and obtain a copy of the specific pieces of Personal Information we collected, used, disclosed and/or sold about you in the last 12 months. To exercise this right, please email your request to info@responsumhealth.com and include “Access Request” in the subject line of your message.
• Right to Portability: You have the right to obtain a copy of your Personal Information that you previously provided to us in a portable, and to the extent technically feasible, readily usable format that allows you to transmit the Personal Information to another business without hindrance, where the processing is carried out by automated means. To exercise this right, please email your request to info@responsumhealth.com and include “Access Request” in the subject line of your message.
• Right to Delete: You have the right to request us to delete the Personal Information we have collected or maintain about you. Please note that certain exceptions may apply to your right to delete information, such as when we must retain Personal Information as required or permitted by law and we will maintain a copy of your deletion request. We will notify you if any such exceptions apply to your request. To exercise this right, please email us at info@responsumhealth.com and include “Deletion Request” in the subject line of your message.
• Right to Opt Out of Sale or Sharing: You have the right to opt out or ask us not to sell or share your Personal Information. Please note that we do not sell or share your Personal Information. However, please note that we do use and share your information in order to connect you with clinical trials and provide our Services per your request.
• Right to Correct: You have the right to request that we correct any inaccurate Personal Information that we maintain about you. To exercise this right, please email us at info@responsumhealth.com and include “Correction Request” in the subject line of your message.
• Right to Appeal: If we refuse to take action on a request, you have the right to appeal our decision within a reasonable time. To exercise this right, please email your request to info@responsumhealth.com and include “Appeal Request” in the subject line of your message. Within 60 days of our receipt of your appeal, we will inform you in writing of any action taken or not taken in response to the appeal, including a written explanation for the decisions.
• Right to Complaint.  You have the right to submit a Complaint in writing to Responsum Health. Our usual response time is 20-30 working days. Please provide sufficient information, so that we can consider your concerns and contact you. If our response is unsatisfactory or that we have breached the Australian Privacy Principles or the Privacy Act 1988 (Cth) you may make a complaint directly to the OAIC: 1300 363 992 or via www.oaic.gov.au.

We will not discriminate against you for exercising any of the rights noted above. However, we may offer certain financial incentives, charge reasonable fees related to your requests (if such requests are manifestly unfounded, excessive, or repetitive), or deny your right to know, right to access, or right to deletion in accordance with applicable law.

You can exercise these rights yourself or you can designate an authorized agent to make a request on your behalf. If you would like an authorized agent to submit a request on your behalf, please send us an email at info@responsumhealth.com for instructions and details on proof and information required for use of an authorized agent.

8.3. How We Disclose Information

• We do not sell or share your Personal Information or the personal information of minors under age 18.
• We did not sell or share any Personal Information to third parties for their business or commercial purposes during the last 12 months.
• We did not use or disclose any Sensitive Personal Information for purposes other than those specified in section 7027(m) of the CCPA regulations.

8.4. Third-Party Marketing Disclosure

Under California Civil Code § 1798.83, California residents with whom we have a business relationship can request information about the types of personal information, if any, we shared with third parties for the direct marketing purposes of the third parties and the identities of the third parties with whom we shared such information in the immediately preceding 12 months. We do not share your Personal Information with third parties in this manner and have not done so in the last 12 months. You may request more information by contacting us using the contact information at the bottom of this Privacy Policy.

9. INDIVIDUAL RIGHTS – USERS IN THE EEA, SWITZERLAND AND AUSTRALIA

Where we process Personal Information pertaining to individual located in the European Economic Area (“EEA”) or Switzerland, those individuals are entitled to ask us for an overview of the Personal Information we have about them and also to access, correct or delete certain Personal Information, restrict processing of their Personal Information, or to ask us to transfer Personal Information to other organizations. Certain individuals can also object to some processing of their Personal Information and, where we have asked for their consent, they can withdraw their consent at any time. Insofar as Personal Information about them is processed, certain individuals also have a right to know more about the protection we apply when transferring Personal Information to areas outside the EEA.

Note that we are not legally obligated to agree to such requests in all circumstances, and in certain circumstances, agreeing to a request may be infeasible – for example, a deletion request when we are required by law to maintain the Personal Information. Please also note that we are not able to act on any of the above requests if we are not in a position to identify an individual filing such request.

Where applicable, these rights can be exercised by sending us an email through the contact details further below. Depending on where you live, you may have a right to lodge a complaint with a supervisory authority or other regulatory agency if you believe that we have violated any of the rights concerning your Personal Information. We encourage you to first reach out to us at info@responsumhealth.com so we have an opportunity to address your concerns directly before you do so. We are committed to compliance with the General Data Protection Regulation (“GDPR”) where applicable, so please contact us through the details listed below if you have any questions about these rights.

In Australia, the principal piece of Australian legislation relating to the handling and protection of personal information about individuals is known as ‘The Privacy Act 1988 (Privacy Act)’. This includes the collection, use, storage and disclosure of personnel information. The Privacy Act 1988 provides a set of principles, known as the ‘Australian Privacy Principles (APPs), that provide rules about transparency, direct marketing and security of personal information that apply when working with personal information.

The National Health and Medical Research Council (NHMRC) in conjunction with the Office of the Australian Information Commissioner (OAIC), has issued a number of binding guidelines in respect of privacy concerning health-related information.

If your personal information is transferred to a country, other than where the information was provided, Responsum Health maintains compliance with applicable data protection and privacy laws and legal frameworks.

Responsum Health protects personal information entrusted to them no matter what country it is stored in or transferred to and have appropriate safeguards and procedures in place t help ensure the security of your personal information.

10. INTERNATIONAL TRANSFERS OF PERSONAL INFORMATION

Responsum, Inc. is a U.S.-based company with domestic and international business clients. As a result, Personal Information that we collect through the Platforms may be transferred to our U.S. offices to permit us to comply with our legal and contractual obligations, to provide information and services to prospective and current clients, and to perform related business activities. In addition, we may work with third-party service providers in the U.S. and in other countries to support our business activities. Thus, Personal Information may be transferred to, stored on servers in, and accessed from the U.S. and countries other than the country in which the Personal Information was initially collected. In all such instances, we use, transfer, and disclose Personal Information solely for the purposes described in this Privacy Policy.

11. DATA RETENTION

We keep Personal Information for as long as it is needed to fulfill the purposes for which it was collected, to provide our Services, to deal with possible legal claims, to comply with our business interests and/or to abide by all applicable laws. If you register for our Services, we keep your Personal Information for ten (10) years from the point of collection in order to match you to a clinical trial. Thereafter, we either delete Personal Information about you or de-identify it. Please note that even if you request the deletion of Personal Information about you, we may be required (by law or otherwise) to retain the Personal Information and not delete it. However, once those requirements are removed, we will delete Personal Information about you in accordance with your request.

12. DATA SECURITY

We follow generally accepted industry standards to protect the Personal Information we collect or process through the Platforms. However, no method of transmission over the Internet, or method of electronic storage, is 100% secure. Therefore, while we strive to use commercially acceptable means to protect Personal Information, we cannot guarantee its absolute security. Any detected breach of data security will be reported appropriately. 

13. CHILDREN AND PEOPLE WITHOUT THE INTELLECTUAL CAPACITY TO PROVIDE INFORMED CONSENT

The Site is not intended for children under the age of 18. Accordingly, we do not intend to collect Personal Information from anyone we know to be under 18 years of age through the Site. If we become aware that a child under age 18 has provided Personal Information through the Site, we will delete such information from our files.

Any Personal Information entered on behalf of a child under 18 years of age or a person without the intellectual capacity to provide informed consent must be strictly provided by a parent, legal guardian, recognized next of kin or registered carer. 

If you believe we might have any information from a child or about a child, please contact us at Responsum Health: info@responsumhealth.com

14. CHANGES TO THIS PRIVACY POLICY

This Privacy Policy may change from time to time, effective from the date mentioned in the updated version of the Privacy Policy. Please check the Platforms periodically to review such changes in the Privacy Policy. We may email periodic reminders of our agreements and policies in the event of a material change.

15. CONTACT US

If you have any questions about this Privacy Policy or about our privacy or data security practices, please contact us or our Data Protection Officer via the following:

E-mail: info@responsumhealth.com
Address: 100 M Street SE
Suite 750
Washington, D.C. 20003
USA

If you are dissatisfied with your complaint outcome you may refer your complaint to the following:
In Australia, the Office of the Australian Information Commissioner
Director of Compliance, Office of the Australian Information Commissioner, Sydney NSW 2001

In European Union, the European Data Protection Supervisor (https://edps.europa.eu/) or your National Data Protection Authority