WAPPS-Hemo

Last updated: October 31st, 2018

The myWAPPS (Web-accessible Population Pharmacokinetics Service) mobile application and WAPPS-Hemo website (together referred to as the “Service”) are owned by McMaster University (referred to as “we”, “us”, or “our”).

This document explains how your information and Personal Data 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:

  • WAPPS-Hemo generated regimen data
  • Recorded and updated infusions
  • Recorded bleeds and/or activity

While using the Service, we may ask you to provide us with certain personally identifiable information (“Personal Data”). Personal Data may include, but is not limited to:

  • Your email address

How we use your information and Personal Data

We use your information and Personal Data to:

  • Provide the Service that you request;
  • Enable you to use the Service personalized to your own factor levels;
  • Provide you with your estimated factor concentration level, according to your WAPPS-Hemo tailored regimen;
  • Detect and address any technical or other issues with the Service;
  • Improve and maintain the Service.

Your information could be used for research purposes, but only for research projects approved by 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 cases, 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.

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.

Authorized staff of your Hemophilia Treatment Center can access your data, as required for personalization of your treatment. Authorised staff at McMaster University can directly access your data.

Your information is kept on the WAPPS-Hemo 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.

Who we share your information with

We will share de-identified data for approved scientific research purposes. Aggregated de-identified data about usage of the Service can be shared for statistical purposes with authorized third parties (e.g. as applicable, Hemophilia Treatment Center organizations, national or international hemophilia registries, organizations supporting the WAPPS-Hemo project) under specific data transfer or data reporting agreements. In all cases, the information will be fully de-identified to prevent any access to personal information and/or identification of individual patients. Under no circumstances will your email address be provided to anyone.

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 from your device 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 myWAPPS record. Any request to obtain or delete your data should be directed to mywapps@mcmasterhkr.com

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 consistent with applicable law.

Changes to this privacy policy

This Privacy Policy is effective as of October 31, 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. WAPPS-Hemo 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:

mywapps@mcmasterhkr.com