PROBE application (the “Application”) and PROBE website (the “Website”)

Privacy Policy

The PROBE (Patient Reported Outcomes, Burdens and Experience) questionnaire has been developed by the Patient Outcomes Research Group Ltd. (referred to as PORG). McMaster University manages the PROBE database, website and app. For the app, this is done in collaboration with Design2Code Inc. (referred as D2C). "We", "us", or "our" refers to PORG and McMaster.

This document explains how your information and Personal Data (defined below) will be collected, used, stored and protected in accordance with the terms of this Privacy Policy and any applicable legislation. By using the Service, you consent to the terms and conditions as set out in this Policy.

Information we collect

When you use the Service, information we collect may include, but is not limited to:

• Your answers to the PROBE questionnaire
• Date of completion of the questionnaire

While using the Service, we may ask you to provide us with certain personally identifiable information ("Personal Data"). Personal Data means any information about an identified individual or an individual whose identity may be inferred or determined from such information, other than business contact information (e.g. name, title, business address) and this may include, but is not limited to:

• Your email address
• A unique identifier of your record in the linked hemophilia registry in your country (for example, in Canada, the Canadian Bleeding Disorders Registry (CBDR) number)

Under certain circumstances we may be required to disclose Personal Data without your consent. Such circumstances may include, without limitation and subject to applicable laws:

• where use or disclosure of Personal Data is required by applicable law or by order or requirement of a court, administrative agency or governmental tribunal
• where the Personal Data is public as permitted by applicable law
• where the disclosure is to an affiliate, or a third-party service provider acting on our behalf
• where the use or disclosure of Personal Data is reasonable for the purposes of investigating a breach of an agreement, or actual or suspected illegal activity

Who will access your information and Personal Data and how they will be used:

• McMaster staff at the Health Information Research Unit for activities related to maintenance of the PROBE database and to perform data manipulation, including de-identification, and analysis
• PORG will have access to de-identified and aggregate Personal Data and may use such data for research related to persons with bleeding disorders;
• Non-government entities (NGOs) working on hemophilia registries and related issues supporting PORG or government entities working on hemophilia related projects that can benefit from access to data will receive access that may include or be based on your Personal Data and in all appropriate situations, such as when reflecting summary statistics, only deidentified and aggregated data will be provided;
• PORG also may provide information, which may include or be based on your Personal Data (and such data will be deidentified or appropriately limited), to sponsors of, or entities that contract with, PORG, which, in both of the foregoing cases include companies, for the purpose of working on therapies or other products or services for use by or about persons with bleeding disorders;
• Independent investigators may request access to data which may include or be based on your Personal Data, for research purposes, and may be granted access after their request has been approved by the PORG investigator group and ethically cleared as applicable;
• We will access the individual data for the following purposes:
  • Detecting and addressing any technical or other issues with the Service;
  • Updating, improving and maintaining the Service.
• D2C will not store any data and will not access any personal information

The mission of PROBE is to investigate and directly probe patient perspectives on outcomes they deem relevant to their life and care, to enhance the direct patient-voice in health care decision-making. Aggregated de-identified data from patients and controls from your country will be returned at your country’s hemophilia NGO through the PROBE dashboard or through periodical reports under specific data transfer or data reporting agreements.

Your information could be used for clinical and other research purposes, but only for projects approved by a research ethics committee and any other authority required by the applicable laws. We anticipate that for most studies (e.g. those using data collected in the past, duly de-identified, aggregate and anonymous information) the research ethics committee might waive the need for your specific individual consent. In all appropriate cases where no identifying information is necessary, the information will be coded so that researchers using the data bank will not have access to any identifying information. Your email address will never be provided to third parties. We may use your e-mail address to inform you about updates of the Service, research projects you may be entitled to participate through the Service, or any other similar activity. We will limit the volume of these communications to the lowest possible level.

In all cases, the information will prevent direct identification of individual patients. Specifically, your e-mail address and user name will never be shared with any external entity, and will only be used to enhance your participation to the PROBE project through the Website and mobile app. McMaster and PORG may use your e-mail for communicating with you in relation to the PROBE project.

How we store and protect your data

Access to your Personal Data is limited, controlled, and managed to make sure that confidentiality is preserved. Maintaining your privacy and appropriate confidentiality is a top priority to us and strict security rules are in place to guarantee privacy is maintained at all times.

Your information is kept on the PROBE database which is physically located in a secure data centre at McMaster University, in Canada, with appropriate physical, administrative and technical safeguards in place. These procedures protect your information from misuse, unauthorised access, interference, alteration, loss and/or disclosure.

We may retain your information and Personal Data to comply with laws, prevent fraud, resolve disputes, troubleshoot problems, assist with any investigations, enforce our Terms of Use and take other actions otherwise permitted by law.

Data transmission

Your information, including Personal Data, may be transmitted to - and maintained on - computers located outside of your state, province, country or other governmental jurisdiction, where the data protection laws may differ than those from your jurisdiction.

If you are located outside Canada and choose to use the Service, please note the data is sent to our servers in Canada.

Your consent to this Privacy Policy followed by your submission of such information represents your agreement to that transfer.

Your rights to access and control your personal data

Very little Personal Data is collected through the Service. At any point in time, you may request complete erasure of your Personal Data. After deleting your information, some of your data may still be stored as part of previously generated aggregated statistics. At any time, and without providing a reason, you may request to obtain a copy, in an intelligible electronic format, of the data stored in your PROBE record. Any request to obtain or delete your data should be directed to info@probestudy.org. If you decide to complete the questionnaire anonymously, you will not be able to obtain your data, because we will not be able to retrieve them.

You understand and agree that you assume all responsibility and risk for your use of the Service, the internet generally, and the documents you post or access and for your conduct. Upon your request, we will take reasonable steps to correct, amend or delete your Personal Data that is found to be inaccurate, incomplete or processed in a manner non-compliant with this Privacy Policy except where the burden or expense of providing access would be disproportionate to the risks to your privacy, where the rights of persons other than you would be violated, or where doing so is otherwise inconsistent with applicable law.

What happens if you decline to use PROBE App, to create a PROBE account, or to login with your national bleeding disorder registry account?

If you choose not to create an account in the PROBE App, PROBE website or to login through your national bleeding disorder registry for longitudinal data collection, you may choose to complete the questionnaire anonymously, either electronically or on paper. The data will be stored separate from the identified PROBE database and could be used in reports and research projects.

Changes to this privacy policy

This Privacy Policy is effective as of December 31st, 2018 and will remain in effect except with respect to any changes in its provisions in the future, which will be in effect immediately after being posted on this page.

We reserve the right to update or change our Privacy Policy at any time and you should check this Privacy Policy periodically. PROBE is committed to assessing, reviewing and updating this Privacy Policy on a case by case basis to meet any changes in regulatory requirements in applicable jurisdictions. Your continued use of the Service after we post any modifications to the Privacy Policy on this page will constitute your acknowledgment of the modifications and your consent to abide and be bound by the modified Privacy Policy.

Contact us

If you have any questions about this privacy policy, please contact us at: info@probestudy.org