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TrialX/Applied Informatics Inc. Privacy Policy

  1. Introduction

    Applied Informatics Inc. (hereby referred to as AI) develops, operates and maintains a web-based clinical trials listing and matching service, TrialX, which is available on www.TrialX.com (hereby referred to as TrialX). AI is committed to ensuring the privacy of its website users and this Privacy policy describes the efforts taken by AI to maintain and safeguard your privacy.

  2. Collection of Personal Data

    General site visitors (referred to as “visitors”) may visit and navigate within the TrialX web site without providing any personal information, such as their name, address, telephone number or e-mail address. It is optional for a user to complete a registration form. However, for the purposes of providing more personalized services, AI provides visitors the ability to become "registered users" (those visitors who decide to join the site by clicking on the “Signup as Patient” or “Signup as Investigator” links within TrialX). This requires that users provide certain personal information (such as but not limited to email, age, gender). Users who register as "Patients" (by clicking the “Signup as Patient” link) can enter additional health information in their account if they wish to do so. Such information is solely used for the purposes of providing more specific clinical trial matches. Another category of visitors may chose to become "Referral Users" by providing personal information on specific clinical trial pages where a trial participation form is displayed (hereby referred to as a 'Widget'). Such visitors are given the option to convert to full registered site users when they receive a reply to their email enquiry for a trial. Users who signup as "Investigators" (this category can include users who are physician-investigators, clinical research coordinators, patient recruitment specialists and other such verified individuals) are required to provide their contact details and name of the institution or organization where they primarily conduct clinical research activities. In addition to a full user registration or a referral user option, AI also provides non-registered visitors the ability to receive periodic updates (referred to as “Patient Notification Service”) on new clinical trials or general news related to clinical trials. To register for the Patient Notification Service, a visitor must provide only their e-mail address and a medical condition of interest (such as ‘Diabetes’). Such notification registrants are not considered TrialX registered users (and thus not asked to provide any other additional information) but conditions and safeguards described here are also applicable to such individuals.

  3. Using Third-party Online Personal Health Records

    TrialX allows users to import their health information from Third-party Online Personal Health Record (TOPHR) services such as Microsoft HealthVault (www.healthvault.com) and Google Health (www.google.com/health). TrialX may be listed in the application directory provided by a TOPHR, in which case you can link the TrialX application to your health profile at the TOPHR site. Once you add the application, TrialX pulls relevant information from your TOPHR in a secure manner and uses that information to match you to clinical trials. By using TrialX with a TOPHR, you are giving AI permission to request a temporary copy of your personal health information from TOPHR for the purposes of matching you to clinical trials. This data request is only made for a short period (as and when you use our service) when you request to be matched to a trial and is NOT stored by TrialX. If however, you decide to register as a user on TrialX and link your TrialX account with your TOPHR, then during your clinical trial search session, TrialX may request you to provide additional information, which will be used to further refine your clinical trial matches and this information will be stored by TrialX. This information is used to tailor the clinical trials to an individual and to send any updates for new clinical trials as they become available.

  4. Collection of Site Traffic Data

    We collect certain data such as website access time, date, IP address (a number which identifies which computer is accessing a site), type of computer, Internet browser and other such related information, which is collectively called “Traffic Data”. Such records are derived from our web servers’ access log files (computer files that store entries for requests made to AI’s servers) and this data is used for determining site usage and Traffic, a routine and standard industry practice. Such data are used for improving our user experience and gather broad usage information in aggregate form.

  5. Collection of Data through Site Interaction

    AI also collects and aggregates data from visitors’ or users’ usage of the site. This includes recording the different clinical trials searches performed on TrialX or storing any user-input data in forms/questionnaires. This information is not personally identifiable for non-registered visitors and is only used in aggregate numbers to determine site usage and to determine the types of searches being performed on the TrialX website (such as number of people who search for diabetes clinical trials).

  6. Usage of Personal Information

    All user data is used in ways to provide the services intended on this website, in a manner that protects the privacy of our users. The primary use of data of a user who registers as a ‘Patient’, is to use the information to match them to relevant clinical trials. This information is also contained in a de-identified email that is drafted on behalf of the patient user, if they decide to contact the investigator of the matched clinical trial. Patients have the option to send the email as a de-identified patient(only if they are "Regsitered users"), marked in the email as ‘ParticipantXXXX’ where ‘XXXX’ is a numeric identifier (referred to as ‘Patient ID’) that is not known to investigators or other users. Patients can however, chose to send the email as themselves (aka, send the email in their name) but this is solely at the discretion of the patient ("Referral Users" have to provide their name, email and optionally, a phone number). Such email is sent as a notification message to the said trial investigators and their related personnel (such as research coordinators, call center personnel and the like) and the message is also stored in the TrialX inbox for the investigator and the ‘Sent message’ box for the patient. AI verifies each investigator listed for a Trial (see Terms of Service for Verification process) in a “best effort” manner and relies on the information provided by public clinical trial databases, partner clinical trial databases and individual investigator trial submissions.

    Personal information provided by users is also made searchable by registered site investigators. When investigators search for patients, the results mask the identity of the patient and identify them with a non-identifiable Patient ID (only applicable for "Registereed users", as described in the preceding paragraph). Additionally, the system masks the patient’s real contact information and routes any messages sent to the patient through the TrialX internal messaging system(this doesnt apply for "referral users" whose contact information maybe sent to the investigators as is).

    AI uses personal information to send periodic notifications to patients when they receive replies from investigators, when they receive an investigator-initiated request for participation and to send updates about clinical trial developments.

  7. Sharing of User Information

    AI does not sell, trade or rent to others your personally identifiable information collected on the TrialX site. There are only certain circumstances in which AI shares information with its registered users or its business partners which is necessary to provide the stated services of the website. AI shares a patient’s information with registered TrialX investigators as detailed in section 6 above. AI will only share aggregate statistical information about clinical research trends (such as kinds of trials searched for by people). This aggregate information does not contain personally identifiable information and therefore cannot identify any specific individual. The aggregate information is derived from information about general visitors, registered users and those who signup for patient notification services. AI provides aggregate information about number of investigators signed up on TrialX to its partners to measure the effectiveness of their marketing efforts.

  8. Investigator and Patient Communication

    Investigators, their employees, and their agents should be particularly cognizant of their responsibilities for maintaining patient confidentiality, including without limitation their obligations under the Health Insurance Portability and Accountability Act ("HIPAA") and the ‘Good Clinical Practices (GCP). Any messages sent by patients to investigators through TrialX, should be treated as privileged communication. All communication between Investigators and Patients is deemed to occur with express consent of both the parties and such information will not be disclosed to any other users/parties by AI. AI will however, reserve the right to monitor all communication that occurs between patients and investigators so as to ensure reliability and security of its service and patients and investigators waive the right of confidentiality of such communication for AI and its employees for the purpose of ensuring the delivery of the service.

  9. Public Postings and Information

    AI allows registered users to post questions regarding clinical trial on its community page (through “Ask a question” link). Such postings in the online discussion forums are made in the name of the user and are considered public information and is not in any way private. AI encourages users to consider carefully before disclosing any personally identifiable information in any public forum. Such information may also be read by non-registered users of TrialX or indexed/crawled by search engines and may be used by others in ways that are beyond the control of AI.

  10. Security and Confidentiality of Data

    We take all the necessary steps to keep your data safe and secure. With respect to that commitment, user/site usage and other data are stored in a highly secure and reliable manner. AI takes all required precaution to protect our users' information. Only employees who need the information to perform a specific job are granted access to personally identifiable information. We secure all data exchanges and Internet communications with a secure server, using secure sockets layer (SSL) with 2048 bit encryption and digital certificates. All AI’s employees and agents with access to databases have signed confidentiality agreements, which forbids any use of the data beyond supporting AI’s working needs. Critical account access information (passwords, secret questions/answers) is encrypted in the database so they will be indecipherable to those who are able to access the database. We will never ask you for your password or secret question/answer, and you should inform us if anyone has attempted to obtain this information from you.

  11. Links to other websites

    This Web site contains links to other sites such as the www.ClinicalTrials.gov or www.CenterWatch.com. Please be aware that AI is not responsible for the privacy practices of such sites. We encourage our users to be aware when they leave our site and to read the privacy statements of every Web site that collects personally identifiable information.

  12. Notification of Changes

    If we decide to change our privacy policy, we will post changes on the TrialX website under the ‘Privacy’ page so that our users are aware of the information we collect, the ways we use it, and any circumstances under which we disclose it. If at any point we decide to use personally identifiable information in a manner different from that stated at the time it was collected, we will notify users by way of email. Users will have a choice as to whether or not we can use their information in this different manner. We will use information in accordance with the privacy policy under which the information was collected.

Last Updated: Jan 26, 2010