Privacy Policy
This Privacy Policy describes the manner in which Project FIND-OUT (“Project FIND-OUT” or “We”) collects, uses, maintains and discloses information collected from users (“You” or a “User”) of the Project FIND-OUT.com website (“Site”). This Privacy Policy applies to the Site and all products and services offered by Project FIND-OUT. If, after reading the Terms of Use and this Privacy Policy, You do not agree, do not use the Site.
General
This Site provides information about Project FIND-OUT, which is a research collaboration providing whole genome sequencing for infants who have symptoms that suggest they may be at risk for a genetic neurodevelopmental disorder. This site is addressed to patients and caregivers located in the United States seeking such services. You may contact Project FIND-OUT through the Site to set up a phone call with a Project FIND-OUT research coordinator via email, phone, or by completing the enrollment form. The enrolment form asks for certain information about You and your child, which may include health information. You may choose what information You share through the Site.
How Do We Collect Personal Information?
Certain areas of the Site can be visited without submitting any personally identifiable information. However, there are some areas that require you to share an email address in order to access certain materials or other content or services.
We collect personally identification information from You that You provide to us such as:
- Fill out a form, including “Contact Us” or the Project FIND-OUT enrollment form
- Respond to a survey
The information that You provide and We collect may include Your:
- Name
- Your loved one’s name
- Date of birth of your loved one
- Contact information, such as
- Mailing Address
- Phone Number
- E-mail Address
- Messages sent through a form on the Site
- Health information about your loved one, such as symptoms and diagnoses
- Other personal information You provide to Us
How Do We Use This Information?
- To provide services to You
- We use the information You provide to Us to provide the services available from Project FIND-OUT.
- To advance treatment options
- We share the de-identified, summary data you provide to Us to our research partners, such as academic researchers, advocacy groups, and pharmaceutical companies to advance treatment options.
- To improve customer service
- Information You provide helps us respond to Your customer service requests and support needs more efficiently.
- To improve user experience
- We may use information in the aggregate to understand how our users as a group use the services and resources provided on our site.
- To improve Our Site
- We may use feedback You provide to improve our products and services.
- To run a promotion, contest, survey or other Site feature
- We may send You information You agreed to receive about topics We think will be of interest to You.
- To send periodic emails
- We may use the email address to send User information and updates pertaining to Your requests through the Site. It may also be used to respond to User inquiries, questions, and/or other requests. If You decide to opt-in to Our mailing list, they will receive emails that may include company news, updates, related product or service information, etc. If at any time the User would like to unsubscribe from receiving future emails, We include detailed unsubscribe instructions at the bottom of each email.
- For the purposes specified at the time of collection
- There may be other purposes that are specified when the information is collected
- As content on the Site, when uploaded by You or with Your permission
- We may permit You to upload pictures or comments to the Site.
- As otherwise required or permitted by law
- There may be times when the law permits or requires Us to use information for other purposes.
Certain information that is provided to the Site may not be private, and You may be required to provide certain information to access certain areas of the Site. Please consider carefully the information that You choose to submit to Us through the Site.
Most areas of the Site can be viewed by the general public. We have no control over, and disclaim responsibility or liability for, how other Users may respond to, use or misuse the content that You post for public viewing on this Site, or for any actions taken by other Users related to content that You post on the Site.
How Can You Correct This Information?
- You can send an email to Us at clinicalteam@projectfindout.com asking that information be corrected.
What Information is Automatically Collected?
We collect certain information automatically, including:
- The city and country you are located;
- The IP address of the computer You are using;
- The browser name and the type of computer You are using;
- Technical information about Your computer such as the operating system and the Internet service providers You are using, and other similar information.
This information is not considered personally identifiably unless it is combined with contact information, account information, or other information that is unique to You. We only combine automatically collected data with identification data if it is necessary to do so to complete a task You have asked us to perform (for example, to troubleshoot a problem You are having with the Site) or if We tell You (for example, if You fill out a form the tells You it will be matched with automatically collected data).
Device Identifiers and Other Tracking
The Site uses unique device identifiers (“UDID”) or other tracking capabilities to enhance User experience. The UDID is an identifier that uniquely identifies Your device and allows the Site to recognize You and Your device when You return to the Site. UDID and the other tracking technologies used by the Site are intended to improve User experience. For example, the UDID can help the Site remember You between visits. You can set Your device to refuse cookies, or to alert You when cookies are being sent. It is not possible to refuse the UDID, as that is necessary for the Site to work. However, the information from the UDID is only used to make the Site work as well as possible for You.
Google Analytics Notice
We use Google Analytics, which uses the UDID to analyze traffic on the Site. For instance, Google Analytics tells us how many people have used the Site, how they move through the Site, and how long they spend on each area of the Site. Users agree that their information may be used by Us to perform services or run Our business.
California Do Not Track Notice
Many internet browsers have “Do Not Track” features which, when turned on, send a signal (the “DNT signal”) to the websites a user visits that indicates the user does not want to be tracked. Because there is not yet a common understanding of how to interpret DNT signals, and there is no common definition of “tracking”, We do not currently respond to DNT signals on the Site. We do not engage in targeted behavioral advertising.
Your California “Shine the Light” Privacy Rights
Upon Your request, submitted to clinicalteam@projectfindout.com, We will advise You of any categories of personal information that We disclose to third parties, and (to the extent We know) whether those third parties use that information for their direct marketing purposes. If We provide Your personal information to a third party, We do not allow that third party to use that information for marketing their services, unless You have consented to that use.
How Do We Protect Your Information?
Health is a sensitive topic. We use reasonable data collection, storage and processing practices and security measures to protect against unauthorized access, alteration, disclosure or destruction of Your personal information, username, password, transaction information and data stored on Our Site. However, it is impossible to guarantee security of any website, or of data transmitted over the Internet. While We seek to protect information, We cannot guarantee the security of any personal information You provide through the Site. Please think carefully about the information you share with Us through the Site.
How Do We Share Your Personal Information?
We do not sell, trade, or rent Your personal identification information to others.
We may share information about visitors to the Site:
- With Our business partners, trusted affiliates and advertisers to help provide services that are described above.
- With third party service providers that help us operate Our business and the Site or administer activities on Our behalf, such as sending out newsletters or surveys, if You have agreed to receive them.
- With companies that provide services to us, such as website hosting services or credit card processing services.
- With companies that are disclosed to You at the time You provide the Information.
- With Your permission, We will share Your information with entities or companies that provide services that may be of interest to you.
- As permitted or required by law; for example, to comply with a court order or subpoena, or to prevent or investigate a crime or fraud. We may share information if necessary to enforce this Privacy Policy or Terms of Use of the Site. We reserve the right to report to appropriate law enforcement or government agencies activities that We, in good faith, believe to be harmful or unlawful, with or without providing notice to You.
Third Party Websites
Users may find advertising or other content on Our Site that link to the sites and services of Our partners, suppliers, advertisers, sponsors, licensors and other third parties. We do not endorse the products of those companies, do not control the content or links that appear on these sites and are not responsible for the practices employed by websites linked to or from Our Site. In addition, these sites or services, including their content and links, may be constantly changing. These sites and services may have their own privacy policies and customer service policies. Browsing and interaction on any other website, including websites which have a link to Our Site, is subject to that website’s own terms and policies.
Protecting Children’s Privacy
The Site is intended to be used by individuals over the age of 13. We do not knowingly collect personal information from children under 13 years of age. If We become aware that We have collected personal information from a child under 13 years of age, We will promptly remove such information. If You believe We have collected information from Your child, please notify us through “Contact Us.”
Changes to this Privacy Policy
We have the discretion to update this Privacy Policy at any time. When We do, We will revise the “updated” date at the bottom of this page. We encourage Users to frequently check this page for any changes to stay informed about how We collect and use Your information. You acknowledge and agree that it is Your responsibility to review this Privacy Policy periodically and become aware of modifications.
Access from Outside the United States?
Project FIND-OUT only offers services within the United States, and the Site is only intended to be used by Users in the United States. If You are using the Site when outside the United States of America, Your information will be transferred to, stored, and processed in the United States. The privacy laws of the United States may not be as protective as those in other jurisdictions. By using the Site, You acknowledge that We collect and process Your data as described in the Terms of Use and Privacy Policy. We collect and use information as reasonably necessary to fulfill Your requests for Our services, to operate Our business, and to comply with law. You acknowledge that these are acceptable reasons to collect and process Your data. You also consent to the transfer of Your information to the United States and the use and disclosure of Your information as described in this Privacy Policy. If You want Us to correct, delete, or no longer process Your data, please contact us at the “Contact Us” address below. You understand and agree that a request for us to delete or no longer process Your data means that You can no longer use the Site, as it is necessary for Us to process Your data to provide the services.
Updating Your Information
If Your information needs to be updated, corrected, or deleted, please notify Us using the contact information provided below. Your personal information can only be deleted in accordance with Our data retention policy, and as permitted by law. Further, personal information may remain in databases, access logs, backup media, and other records. We cannot update or remove information from records of third parties.
Acceptance of Policy
We collect and use information as reasonably necessary to fulfill requests by Users, to operate Our business, and to comply with law. By using this Site, You signify Your acceptance of this policy. If You do not agree to this policy, please do not use Our Site. Your continued use of the Site following the posting of changes to this policy will be deemed Your acceptance of those changes.
Contact us
If You have any questions about this Privacy Policy or Your interactions with this Site, please contact us at clinicalteam@projectfindout.com.
