Data privacy statement

Last updated 9/1/2021

We are committed to protecting your personal information and your right to privacy. If you have any questions or concerns about our policy, or our practices with regards to your personal information, please contact us at carolyn@scope-sci.org.

In the following policy we explain to you what information we collect, how we use it and what rights you have. If there are any terms in this privacy policy that you do not agree with, please discontinue use of our Site and our services.

WHAT INFORMATION DO WE COLLECT?

If you only browse our site or use the search function for trials, we do not collect any data that can be related to you. This only applies if you use the functions “get in touch” or “notify me”.

Our goal is to collect as little personal information as possible and only information that you provide to us voluntarily such as gender, age, email address and specifics regarding the type of your injury (injury level, injury level, time since injury).

We need your email address to inform you if you would match one or more of the studies on our site. To determine which trials are relevant for you, we need the above-mentioned information about your interests.

We process your information for purposes based on legitimate interests, the fulfillment of your wish to either sign up for notifications on new/updated trials or to get in contact with a contact person of the study (as listed on clinicaltrials.gov).

As for “notify me”, if you wish to unsubscribe from notifications you have applied for, we will delete all records (mail address and study interests) immediately.

As for “get in touch”, we are not saving and storing contact form data connected to your personal data - we are just transferring it to the study organization’s contact mail address. For statistical purposes (“analytics”) we store contact form data in an anonymized form, which means that none of information can be referred to your name or your mail address. This includes the following selection:

  • Trial and trial location
  • Age
  • Gender
  • Injury Level (from – to)
  • Severity
  • Time since Injury

The goal of analytics in SCI Trials Finder is solely to help improve our service and the work of SCI scientists all around the world.

WHAT INFORMATION IS COLLECTED AUTOMATICALLY?

We automatically collect certain information when you visit, use or navigate the site. This information does not reveal your specific identity (like your name or contact information) but may include device and usage information, such as your IP address (will be anonymized), browser and device characteristics, operating system, language preferences, referring URLs, device name, country, location (will be anonymized), information about how and when you use our site and other technical information.

Automatically collected information is primarily needed to maintain the security and operation of our site, and for our internal analytics and reporting purposes

For this, our site uses Web and Mobile Analytics by Matomo. Matomo works without cookies, ensures GDPR compliance and stores data within the European Union.

DO WE SHARE YOUR INFORMATION WITH ANYONE?

We do not share information that can be related to you without your approval. Upon your approval, we provide the possibility for you to contact the contact persons of the studies yourself through our site. For that reason, we are transferring the following data to the trial organization:

  • Trial and trial location
  • Age
  • Gender
  • Injury Level (from – to)
  • Severity
  • Time since Injury
  • Email address
  • Phone number

In this list only email-address is a mandatory information.

IS YOUR INFORMATION TRANSFERRED INTERNATIONALLY?

Our servers are located in the United States. If you are accessing our site from outside the United States, please be aware that your information may be transferred to, stored, and processed by us in our facilities in the United States, and other countries.

HOW LONG DO WE KEEP YOUR INFORMATION?

We will only keep your personal information for as long as it is necessary for the purposes set out in this privacy policy. When we have no ongoing legitimate business need to process your personal information, we will either delete or anonymize it.

IS YOUR INFORMATION SAFE?

We have implemented appropriate technical and organizational security measures designed to protect the security of any personal information we process. Unfortunately, no transmission of personal information over the Internet can be guaranteed to be 100% secure. Accordingly, and despite our efforts, we cannot guarantee or warrant the security of any information you transmit to us, or to or from our online services. We have no responsibility or liability for the security of information transmitted via the Internet. If you have questions about this policy or the security of your personal information, please contact us as indicated under the “Contact Information” section below.

DO WE COLLECT INFORMATION FROM MINORS?

We do not knowingly solicit data from or market to children under 13 years of age.

WHAT ARE YOUR PRIVACY RIGHTS?

Since we do only collect gender, email address and level of interest, there is no way for us to link this information to you or your name.

SCITrialsFinder.net tracks information about how visitors use the service but does not retain individually identifiable information about visitors.

DO WE UPDATE THIS POLICY?

We may update this privacy policy from time to time. The updated version will be indicated by an updated "Revised" date and the updated version will be effective as soon as it is accessible. If we make material changes to this privacy policy, we may notify you either by prominently posting a notice of such changes or by directly sending you a notification. We encourage you to review this privacy policy frequently to be informed of how we are protecting your information.

If you have questions or comments about this policy, you may contact us by email at carolyn@scope-sci.org.