Privacy Statement

The 10 Information Privacy principles developed by the Canadian Standards Association and adopted into law as Bill C-6 are now known as The Personal Information Protection and Electronic Documents Act (PIPEDA). They were adopted by our Board of Directors in 2002.

We collect information through emails sent to us and through our database of patients and care-givers. Our promise is to keep this information secure as described in the resolution adopted below. We promise that we will be the only ones to contact anyone registered in our database, unless they expressly permit us to allow a researcher to contact them. We will not sell or share the information under any circumstance.

Our online database partner, Pixelera, whose donated online service enables us to securely collect information for the Patient Registry, has provided a statement for you, below. We download the data and erase it from the online database, and and except for email addresses, store the profile data securely offline only on disk. We keep the profile data on disk in a nearby bank's vault.

Principle 1 - Accountability

An organization is responsible for personal information under its control and shall designate an individual or individuals who are accountable for the organization's compliance with the following principles.

Principle 2 - Identifying Purposes

The purposes for which personal information is collected shall be identified by the organization at or before the time the information is collected.

Principle 3 - Consent

The knowledge and consent of the individual are required for the collection, use, or disclosure of personal information, except where inappropriate.

Principle 4 - Limiting Collection

The collection of personal information shall be limited to that which is necessary for the purposes identified by the organization. Information shall be collected by fair and lawful means.

Principle 5 - Limiting Use, Disclosure, and Retention

Personal information shall not be used or disclosed for purposes other than those for which it was collected, except with the consent of the individual or as required by law. Personal information shall be retained only as long as necessary for the fulfilment of those purposes.

Principle 6 - Accuracy

Personal information shall be as accurate, complete, and up-to-date as is necessary for the purposes for which it is to be used.

Principle 7 - Safeguards

Personal information shall be protected by security safeguards appropriate to the sensitivity of the information.

Principle 8 - Openness

An organization shall make readily available to individuals specific information about its policies and practices relating to the management of personal information.

Principle 9 - Individual Access

Upon request, an individual shall be informed of the existence, use, and disclosure of his or her personal information and shall be given access to that information. An individual shall be able to challenge the accuracy and completeness of the information and have it amended as appropriate.

Principle 10 - Challenging Compliance

An individual shall be able to address a challenge concerning compliance with the above principles to the designated individual or individuals accountable for the organization's compliance.

Pixelera's Statement:

Our web server retains NO information about our visitors regarding domain or email address. The only information we collect is what you voluntarily offer by completing our online survey. We do not share our information with anyone. The information you supply in the Survey will only be used for statistical purposes without referencing the origin. If our information practices change at some time in the future we will prominently post the policy changes to our web site to notify you of these changes and provide you with the ability to opt out of these new uses. If you feel that this site is not following its stated information policy, you may contact us at privacy@pixelera.com.