Last updated: 01 July 2015
MyCBDR Terms and Conditions
- MyCBDR is a personal treatment recording tool and is not a substitute for direct contact with your Hemophilia Treatment Centre (HTC) or professional medical advice. It is essential that you attend a regular review with your doctor or HTC to make sure that the dose of product and your treatment plan still suits your current situation. If you have any questions or concerns about your bleeding disorder, contact your HTC or nearest emergency medical centre for assessment and advice.
- Once you register in MyCBDR the information you input (including personal information) becomes a part of the Canadian Bleeding Disorders Registry (CBDR). The CBDR is operated by McMaster University and the Association of Hemophilia Clinic Directors of Canada (AHCDC). MyCBDR forms a part of the CBDR which is operated by McMaster University and the Association of Hemophilia Clinic Directors of Canada. This national system is used by HTCs for clinical care of their patients.
- If you misuse the MyCBDR system then your HTC may choose to suspend or cancel your registration.
- You must read the full terms and conditions and the CBDR/MyCBDR Privacy Notice – Collection of Personal Information before you can complete the registration process for MyCBDR.
- Participating in MyCBDR is completely voluntary. There are no consequences if you decide not to register.
- By registering you will have a quick and easy way to record bleeds, treatments at home, stocktake and update your contact details which will be added to the Canadian Bleeding Disorders Registry (CBDR). All of these details will be saved in a secure database.
- You can register for MyCBDR if you are a patient on CBDR and have been diagnosed with hemophilia A, hemophilia B or other factor deficiencies including fibrinogen, all types of von Willebrand Disease (VWD), platelet dysfunction, acquired factor VIII inhibitor, acquired von Willebrand Disease and some vascular disorders. You can also register on MyCBDR if you are an authorised representative (such as caregivers or parents of a minor child or minor children) of a patient in the CBDR.
- Please note that if the MyCBDR system is interrupted for any reason you should record your bleeds, inventory and/or treatment in the paper diary provided by your HTC. Those details can then be updated into the MyCBDR system once the system is operational.
- Compliance with these user conditions by all MyCBDR users is essential to maintaining the integrity of MyCBDR and CBDR.
- To protect your private information and all data stored on MyCBDR, it is strongly recommended that all users access their MyCBDR accounts using private computers that are free of malware (viruses), have a local or personal firewall enabled, and have recent security patches installed. Do not enter your MyCBDR username and password on an untrusted or public computer.
- McMaster University may make changes to these terms and conditions from time to time. If those changes impact on your rights or responsibilities as a MyCBDR user we will notify you and ask you to accept the new terms and conditions of use before you can access MyCBDR.
- When you register for MyCBDR you will need to specify one or more person that has a bleeding disorder and, if you are applying on behalf of someone else, your relationship to that person. This will help to define your access rights. You must notify your HTC promptly of any change in circumstances for the person with the bleeding disorder that you have specified on the User Registration Form and/or your authorisation to access the system on their behalf (e.g. reaching the age of majority, reaching the age of 14 if you are in Quebec, person with the bleeding disorder reaching adulthood and/or becoming independent, etc.).
- As a MyCBDR user you will be required to give a unique email address for your username and you will be provided with a temporary password to log on to MyCBDR. You will be asked to change your password before you can use MyCBDR.
- You should keep your login details safe so that no one else can access your information. If you detect any unauthorised access, it should be reported as soon as possible. You can call (905) 525-9140 Ext. 27595 or email email@example.com if you have any issues with your account, including concerns about unauthorised access.
Each MyCBDR user is authorised to access and use MyCBDR for the purposes of:
- recording personal contact details and treatment information to assist with condition management;
- facilitating coordination with suppliers of clotting factor products and Canadian government agencies.
- As a MyCBDR user, you are required to comply with instructions for the proper use of MyCBDR, or procedures associated with the use of MyCBDR, notified via the MyCBDR System Administrator or by health care professionals authorised to activate and manage your user account, at any time.
In particular, you must:
- enter your data correctly;
- acknowledge that you have understood these terms and conditions which include the CBDR/MyCBDR Privacy Notice – Collection of Personal Information;
- notify MyCBDR problems to your HTC or MyCBDR Support;
- inform the MyCBDR Support line immediately if you suspect that the security of your MyCBDR account has been compromised (e.g. your user name or password has been lost or there has been an unauthorised use of your account).
- The information you provide when registering and using your MyCBDR account must be complete and accurate to the best of your knowledge when you provide it. If you supply incomplete, inaccurate or false information or otherwise misuse the system, your HTC may decide to suspend or terminate your MyCBDR account.
- The entity collecting your personal information for registration and system management purposes is McMaster University, on behalf of your HTC. As part of your MyCBDR application, you will need to provide information about yourself so that the HTC can identify who you are, can work out whether you can be registered and to manage your user account. The data collected is necessary for all of these purposes. In addition, if you are seeking to register as an authorised representative of another person with a bleeding disorder, then further identity information may be sought by your HTC to verify your identity and your authority to register and access MyCBDR on that person’s behalf prior to your account being activated.
- If you choose not to provide some or all of the mandatory information for MyCBDR registration, then unfortunately you will not be able to access the system.
- The information about why and how your personal information is collected, usual use and disclosure of that information and how to seek access or how to correct your personal information is described in detail in the CBDR/MyCBDR Privacy Notice – Collection of Personal Information available at www.mycbdr.ca.
Legal requirements and disclaimer
- If you breach these terms and conditions of use, the HTC may decide to suspend or terminate your MyCBDR account.
- McMaster University does not guarantee the quality of the MyCBDR and CBDR and accepts no liability for any loss, expense, injury or damage that occurs as a result of using the MyCBDR and CBDR system or in connection with that system, regardless of how that loss, damage, expense or injury arises. McMaster University is unable to guarantee the accuracy, currency, completeness or relevance of the information contained within MyCBDR or the CBDR.
- These terms and conditions of use are governed by the laws in force in the province of Ontario and by accepting these conditions you are agreeing to submit to the jurisdiction of the courts of the province of Ontario.
You can contact MyCBDR Support on (905) 525-9140 Ext. 27595 or at firstname.lastname@example.org.