DATA PRIVACY & HOW WE USE YOUR INFORMATION
PD Avengers (Global Alliance to End Parkinson’s Disease Association) respects your privacy and is committed to protecting the information you share with us.
By participating in this survey, you may provide personal information such as your email address, location, demographic information, connection to Parkinson’s, health-related information, opinions and experiences.
We collect this information to better understand the experiences, needs and priorities of the Parkinson’s community; to track changes over time; to improve PD Avengers programs and advocacy; and to produce reports, presentations, research insights and other resources that may help the Parkinson’s community.
Where applicable, we rely on your consent to collect and use your personal information and your explicit consent to collect and use health-related information for the purposes described in this policy.
We use a third party survey provider, Alchemer, to collect and store survey information. Our Alchemer account is hosted in its Canadian data centre, where Alchemer states that collected data is stored in Montréal, Canada using Amazon Web Services (AWS) infrastructure. PD Avengers will not sell or rent your email address or other personally identifiable information. We will not provide your identifiable information to advertisers or other organizations for their own marketing purposes.
We may share aggregated or de-identified survey findings with researchers, Parkinson’s organizations, healthcare professionals, policymakers, funders, partners, the media and the public. These findings will be presented in a way intended to prevent individual participants from being identified.
We may use trusted service providers to operate the survey, store information, send communications, analyze data or provide other technical services. These providers may process personal information on our behalf and are expected to protect it and use it only for the services they provide to us.
Because PD Avengers is an international organization and our service providers may operate in different countries, your information may be stored or processed outside the country where you live. Where required, we will use appropriate safeguards for international transfers of personal information.
Participation is voluntary. You may stop participating or withdraw your consent at any time by contacting us at Larry@PDAvengers.com. Depending on the laws where you live, you may also have rights to access, correct, delete or restrict the use of your personal information, object to certain uses, or request information about how your data is being used. Once information has been fully de-identified or included in aggregated results, it may no longer be possible to identify and remove an individual participant’s information.
You must be 18 or older to participate.
We will retain identifiable Community Pulse information for up to ten years from your last participation, unless a longer period is required by law. Information that is no longer required in identifiable form will be deleted or de-identified. Aggregated or de-identified findings may be retained for longer-term analysis and historical comparison.
We take reasonable administrative and technical measures to protect the information entrusted to us. However, no online system can guarantee absolute security.
If we materially change how we intend to use identifiable information, we will provide appropriate notice and, where required by law, seek additional consent before using the information for the new purpose.
Questions or privacy requests may be directed to:
PD Avengers
Global Alliance to End Parkinson’s Disease Association
2593 Grant Street
Vancouver, British Columbia, Canada V5K 3G6
Larry@PDAvengers.com