Aligning Science Across Parkinson’s (“ASAP”) values its users’ privacy and is committed to protecting it. This Policy explains our online information practices and outlines the choices you can make about what information you provide, how your data is collected, and how it is used. By visiting parkinsonsroadmap.org, GP2.org, hub.asap.science (collectively, “Websites”), you acknowledge the data collection procedures expressed in this Policy.
ASAP uses personal information to better understand your needs and interests, to provide you with the service provided on the Websites and an improved user experience. Once you choose to provide us with personal information, it will only be used to support your relationship with ASAP or provide the services you have requested. We will not sell, rent, lease, or give your personally identifiable information to unaffiliated or non-partner third parties.
Who We Are
Aligning Science Across Parkinson’s (referred to as “ASAP”, “us” “our” and “we”) is a funding initiative jointly implemented by the Coalition for Aligning Science, LLC (“CAS”), and the Michael J. Fox Foundation for Parkinson’s Research (“MJFF”), a nonprofit organization. We are fostering collaboration and resources to better understand the underlying causes of Parkinson’s disease. With scale, transparency, and open access data sharing, we believe we can accelerate the pace of discovery, and inform the path to a cure.
If you have any questions in relation to this privacy notice or how we use your personal information, please contact us.
What We Collect
The personal information you give us may include name, title, address, date of birth, email address, telephone numbers, personal description, organizations, academic degrees, background, projects, and photographs. ASAP will only collect the personal information that we need. In addition, ASAP collects the following information during your visit to the Websites:
- Website tracking information is collected through cookies and analytics services.
- Online web forms are used to subscribe to ASAP newsletters and updates or for contacting ASAP for additional information.
Please see the details below on how we gather or manage this type of information. Our Websites are intended for ages 18 and older. We do not intend to or knowingly collect personal information from minors.
We process personal information to enable us to:
- Provide our research services for the benefit of the public and our contributing research scientists and allied professionals as specified in our constitution.
- Administer our records.
- Promote the interests of the organisation.
- Use online web forms to subscribe to ASAP newsletter and updates or for contacting ASAP for additional information.
- Maintain our own accounts and records.
How We Use It
ASAP uses your information to help us understand your needs and interests and provide you with an improved user experience. Data collected online may also be combined with information you provide through other sources, such as conferences or personal contacts with members of ASAP.
Anonymous (non-personal) data is aggregated for reporting about our website usability, performance, and effectiveness. It is used to improve the customer experience, usability, and site content.
The information provided on the GP2 Hub is used to administer your account and facilitate connections with other users as you permit.
Legal Bases to Process Data
We will only process your information for as long as we have a relevant legal basis to do so. This is usually in order to provide you with the contractual services you have requested from ASAP via the Websites, to respond to enquiries or if you have provided us with adequate consent to process your information for other purposes.
If we choose to process your information under the legal basis of legitimate interests, we will always inform you of our legitimate interest and your right to object.
We will only use your personal data for the purposes for which we collected it, unless we reasonably consider that we need to use it for another reason and that reason is compatible with the original purpose. If you wish to get an explanation as to how the processing for the new purpose is compatible with the original purpose, please contact us.
Cookies contain information about your use of a particular website but do not include any personally identifying information by themselves.
Many cookies are “session” cookies, meaning the cookie does not stay on your computer after you leave the Websites or close your browser. The aggregate information collected permits us to analyze traffic patterns at our site. This can enable us over time to provide a better experience on the Websites.
- Strictly necessary cookies: These cookies enable services you have specifically asked for.
- Performance cookies: These cookies collect information on the pages visited.
- Functionality cookies: These cookies remember choices you make to improve your experience.
- Targeting cookies or advertising cookies: These cookies collect information about your browsing habits to make advertising relevant to you and your interests.
You have options to remove or disable cookies from your browser at any time. Please click here to learn more about how you can manage cookies for your browser.
The Websites use online forms to gather specific information from our site visitors. These forms include an email subscription form and a ‘contact us’ form to send messages to our staff.
Typical information collected is a visitor’s name, contact information, and answers to specific questions about participating in ASAP programs. Data is then stored locally or on our email marketing platform.
Third-Party Websites and Other Sites
The Websites also contain links to other services whose information practices may be different from ours, such as programs, partners, or funders. Visitors should consult these other services’ privacy notices, as ASAP does not control information that is submitted to, or collected by, these third parties.
How Does ASAP Protect Your Information?
ASAP takes appropriate measures to ensure that your personal information is secure, accurate, and kept only for so long as is necessary for the purposes for which it is used. We will never ask for personal information such as a driver’s license number, credit card number, or social security number and will not sell or share your information with anyone outside ASAP.
ASAP respects your right to remove your information from our systems at any time. Please contact us to request your data be removed from our files. We will comply within a reasonable timeframe and reply to your request.
EU and UK Data Subject Rights
ASAP strives to keep your personally identifiable information accurate. In relation to your personally identifiable information, you have certain rights as a Data Subject under the regulations of the General Data Protection Regulation (“GDPR”) of the European Union and United Kingdom. A summary of these rights and how they can be exercised is set out below:
- The right to be informed: We must inform you of how we intend to use your personal information and we do this through the terms of this Policy.
- The right of access: You have the right to request access to your data and we must respond to those requests within one month.
- The right to rectification: If you believe some of your data is incorrect, you have the right to have it corrected.
- The right to erasure: You can request that the information we hold be deleted, and we will comply unless we have a compelling reason not to, in which case you will be informed.
- The right to restrict processing: You can change your communication preferences or opt out of certain communications by sending an email to [email protected].
- The right of data portability: You can obtain and use the data we hold for your own purposes without explanation. If you wish to request a copy of your information, contact us.
- The right to object: You can file a formal objection with us regarding our use of your information with regard to third parties, or its processing where our legal basis is our legitimate interest in it. To do this, please contact us.
- The right to reject automated decision making: You can stop any decision that is made by a computer. However, it should be noted that we do not do this as part of our usual processing operations.
ASAP will aim to encrypt and pseudonymize your personal information whenever possible. ASAP also has protocols in place in the unlikely event that we suffer a data breach and will contact you if your personal information is ever at risk.
For more details regarding our security protections see the section below.
ASAP takes precautions to protect your information. When you submit sensitive information via the Websites, your information is protected both online and offline. Wherever we collect sensitive information, that information is encrypted and transmitted to us in a secure way. While we use encryption to protect sensitive information transmitted online, we also protect your information offline.
Only employees who need the information to perform a specific job are granted access to sensitive information. The computers and servers where we store this information are kept in a secure environment. This is all done to prevent any loss, misuse, unauthorized access, disclosure, or modification of the user’s personal information under our control.
The company also uses Secure Socket Layer (SSL) for authentication and private communications. In addition, ASAP is secured by Let’s Encrypt Authority X3.
Notice to European Union and United Kingdom Users
ASAP’s operations are located primarily in the United States. If you provide information to us, the information will be transferred out of the European Union (EU) and United Kingdom (UK) and sent to the United States. We make sure that any of these international transfers are adequately protected. By providing personal information to us, you are acknowledging its storage and use as described in this notice.
California Consumer Privacy Rights
You have certain rights regarding our use and disclosure of your personal information, as described below:
- Access: The right to request, twice in a 12-month period, that we disclose what personal information we have collected, used, disclosed, and sold about you during the past 12 months.
- Deletion: The right to request that we delete certain personal information we have collected from you.
- Opt-Out of Sale: The right to opt-out of the sale of your personal information.
- Shine the Light Request: The right to request that we provide you with (1) a list of certain categories of personal information we have disclosed to third parties for their direct marketing purposes during the immediately preceding calendar year and (2) the identity of those third parties.
- How to Submit a Request: To submit an access or deletion request, contact us.
- Verifying Requests: To help protect your privacy and maintain security, we will take steps to verify your identity before granting you access to your personal information or complying with your request. If you request access to or deletion of your personal information, we may require you to provide us with information about you to verify your identity. The type of information that we ask for may vary depending on the type and sensitivity of the personal information we hold about you or that you request. If additional information is required to verify your request, we may contact you to provide us with that information before responding to your request for access or deletion. In addition, if you ask us to provide you with specific pieces of personal information, we will require you to sign a declaration under penalty of perjury that you are the consumer whose personal information is the subject of the request. If you designate an authorized agent to make an access, deletion or opt-out of sale request on your behalf (1) we may require you to provide the authorized agent written permission to do so, and (2) for access and deletion requests, we may require you to verify your own identity directly with us (as described above).
- Additional Information: If you choose to exercise any of your rights under the California Consumer Privacy Act, you have the right to not receive discriminatory treatment by us. To the extent permitted by applicable law, we may charge a reasonable fee to comply with your request. Please contact us to request this Statement in an alternative format.
How Long We Keep Your Personal Information For
Unless we explain otherwise to you, we’ll hold your personal information based on the following criteria:
- For as long as we have reasonable business needs, such as managing our relationship with you and managing our operations; or
- For as long as we provide services to you
To determine the appropriate retention period for personal information, we consider the amount, nature, and sensitivity of the personal information, the potential risk of harm from unauthorized use or disclosure of your personal information, the purposes for which we process your personal information and whether we can achieve those purposes through other means, and the applicable legal requirements.
ASAP values your comments and opinions. If you have comments or questions about our privacy notice, contact us via our online form. Please allow for 2-3 business days for a reply.
Conditions of Use, Notices, and Revisions
ASAP reserves the right to make changes to this Privacy Notice at any given time. We advise you to visit this page frequently to make sure that you are up to date with the latest changes. If at any point in time ASAP decides to make use of any personally identifiable information on file, in a manner vastly different from that which was stated when this information was initially collected, the user or users shall be notified by email. Visitors at that time shall have the option to change how their information is shared.