Leapcure provides Services relating to clinical trial awareness, specifically utilising digital marketing strategies to assist in pairing interested and potentially eligible individuals with clinical trials.  This Privacy Policy describes how Leapcure, Inc. ('Leapcure') uses, discloses and otherwise controls and/or processes the personal information provided when individuals engage with Services that Leapcure offers (the 'Services').  This Policy is designed to inform you about what types of personal data we collect when you complete a screening through our Services, how your data is used, with whom it is shared and your rights regarding your personal data. 

This Policy does not apply to the processing of your personal data for screening for any clinical trial that is shared with you. All clinical trial screening will have a separate privacy notice and related informed consent form which would be provided to you at the time of initial screening in that clinical trial. 

Leapcure obtains consent from each individual we collect data from in order to add the individual to a community interested in clinical trials. Leapcure acts as the Controller of your data and utilises third-party processors to share insights regarding clinical trial interest and inform potential clinical research site locations for current and potential future clinical trials.

Data We Collect

When you complete a screening through our Services, you may provide to us:

Third-party sources. We may combine personal information we receive from you directly, including our screening questionnaire, with personal information you explicitly share through other sources, such as:

Automatic user experience data collection. We and our service providers may automatically log information about you, your computer or mobile device, and your interaction over time with the Services, our communications and our website, such as:

We use the following tools for automatic data collection:

We store all of the above-referenced information collected from individuals in our TLS/SSL secure database, which has restricted access to essential individuals and is password protected. When you complete a screening through our Services, all information collected, including notes from calls with individuals to confirm answers to the screening questionnaire, are stored only in the database defined above. The data is stored in a localised database in the Frankfurt region in Germany. 

We use your data for the following purposes or as otherwise explicitly described at the time of consent to this policy:

Contact details and clinical trial preferences.  We will collect your contact details (such as name, postal code and email address) and clinical trial participation preferences when you submit information to join the patient community.  Examples include, how you prefer to be contacted, and your previous participation in clinical trials. This data will be used to contact you for future clinical trials you may be interested in. Processing of your data for these purposes is necessary for you to express your interest in participating in a clinical trial through our Services. You would provide your consent for your contact details and participation preferences to be kept on file to inform you of future clinical trial opportunities.

Health data.  We will collect minimal information about your health when you complete the questionnaire with our Services, such as confirmation on whether you have suffered from the described condition and your current disease stage. This data will be used as necessary to assess your eligibility for joining the patient community.  Once you receive information for a clinical trial you may be eligible for/interested in, you will be asked to provide your explicit consent to share data related to screening for the specific clinical trial with Leapcure or, potentially, the research team.  

Providing your personal data is necessary to ensure you can be initially screened for the community through our Services. If you refuse to provide this data, or do not provide any consent required to process this data, we may not be able to add you to our patient community through our Services.

 

If you are accepted into a future clinical trial, the provision of your data for the clinical trial sponsor and/or the research team for all purposes connected with the clinical trial will be governed by separate privacy notices that will be provided to you at that time.  

User experience data.  We utilise this data as a controller in our own right.  Collection of your personal data for these purposes is necessary for our legitimate interest in understanding your user experience for support purposes and to provide and improve our Website and Services.

As part of these activities, we may create aggregated, de-identified or other anonymous data from user experience data we collect. We may use this anonymous data for user experience  purposes, such as improving our website and screening questionnaire experience and to better tailor experiences to website users, including to analyse and improve the Services provided and promote our business.

Marketing and advertising. We may collect and use your contact information for marketing and advertising purposes, including:

Compliance and protection. We may use your data to:

We may share your user-experience and clinical-trial–interest data with:

Service providers. Companies and individuals that provide services on our behalf or help us operate our Services or our business (such as hosting, information technology, customer support, email delivery and website analytics services).

Business clients. We share your personal information with business clients to help better assist you in finding clinical trials.

Professional advisors. Professional advisors, such as lawyers, auditors, bankers and insurers, where necessary in the course of the professional services that they render to us.

Authorities and others. Law enforcement, government authorities and private parties, as we believe in good faith to be necessary or appropriate for the compliance and protection purposes described above.

Business transferees. Acquirers and other relevant participants in business transactions (or negotiations for such transactions) involving a corporate divestiture, merger, consolidation, acquisition, reorganisation, sale or other disposition of all or any portion of the business or assets of, or equity interests in, Leapcure or our affiliates (including, in connection with a bankruptcy or similar proceedings).

We are collecting your data to determine your interest in clinical trials.  

 

Activities of this kind are often called a patient database/patient community. If you complete the screening process and you confirm you wish to be considered for inclusion in the patient community, we will then keep your information on file for the time specified and inform you of any future Studies you may be eligible for, once those Studies open. If you are eligible for a study, you would consent to sharing data for that specific study before we send your personal data (including your health data if you have consented) to the relevant study site so that they can determine whether you are a fit for the study. 

 

Your clinical-trial–interest data may also be shared with the sponsor of clinical trials (and/or representatives working on the sponsor’s behalf, such as data processors) in pseudonymised form for the purpose of sharing updates on our patient community. Pseudonymised form means that the data that identifies you is replaced with a data-subject identification number, which is a number specific to you, to protect your identity. 

 

We may share your pseudonymised data with our representatives, and providers of services and functions on our behalf (that is, providers of hosting services, cloud services and other information technology service providers) or consultants, who will use the data for the purposes described above.  The data is stored in a localised database in the Frankfurt region in Germany. 

Opt-in to marketing communications. You may opt in to marketing-related communications by following the opt-in instructions contained in the marketing communications we send you.

Online tracking opt-out. There are a number of ways to limit online tracking, which we have summarised below:

Note that because these opt-out mechanisms are specific to the device or browser on which they are exercised, you will need to opt out on every browser and device that you use.

Do Not Track. Some Internet browsers may be configured to send 'Do Not Track' signals to the online services that you visit. We currently do not respond to 'Do Not Track' or similar signals. To find out more about 'Do Not Track,' please visit http://www.allaboutdnt.com.

Leapcure would like to make sure you are fully aware of all of your data protection rights.  Your participation in our Services is always voluntary.  Every user is entitled to the following:

The right to access - You have the right to request that Leapcure provide copies of your personal data.

The right to rectification - You have the right to request that Leapcure correct any information you believe is inaccurate.  You also have the right to request that Leapcure complete any information you believe is incomplete.

The right to erasure - You have the right to request that Leapcure erase your personal data, under certain conditions.

The right to restrict processing - You have the right to request that Leapcure restrict the processing of your personal data, under certain conditions.

The right to object to processing - You have the right to object to Leapcure’s processing of your personal data, under certain conditions.

The right to data portability - You have the right to request that Leapcure transfer the data we have collected to another organisation or directly to you, under certain conditions.

The right to withdraw consent - You have the right to withdraw your consent, which we obtain before collecting any data, at any time to no longer be considered for our Services.

If you make a request, we have one month to respond to you.  If you would like to exercise any of these rights, please contact our Data Protection Officer at:  privacy@leapcure.com

We keep your data only for as long as it is necessary to conduct the activities described above on behalf of Leapcure, or with your consent as described in this Notice.  This includes all categories of data in the above-referenced items, and any account information, such as your username and password to access completed screening questions. Data is not kept beyond ten (10) years under any circumstances, unless required by law.

If you have consented to do so, we may retain your contact details and participation preferences to inform you of future clinical trials. 

Our Services may contain links to websites and other online services operated by third parties. In addition, our content may be integrated into web pages or other online services that are not associated with us. These links and integrations are not an endorsement of, or representation that we are affiliated with, any third party. We do not control websites or online services operated by third parties, and we are not responsible for their actions.

We employ a number of technical, organisational and physical safeguards designed to protect the data we collect. However, no security measures are fail-safe and we cannot guarantee the security of your personal information.

The Services are not intended for use by children under 13 years of age. If we learn that we have collected personal information through our Services from a child under 13 without the consent of the child’s parent or guardian as required by law, we will delete it.

Leapcure reserves the right to alter this Privacy Policy, so please review the policies and website frequently. If Leapcure makes a material change we will notify you here, by email, by means of a notice on our home page, or other places Leapcure deems appropriate within 30 business days. What constitutes a 'material change' will be determined in good faith.

You can reach us by email at privacy@leapcure.com or by mail at the following address:

601 Marshall St

Redwood City, CA 94063

If you would like to learn more about Leapcure, please email us at info@leapcure.com or visit our website (www.leapcure.com) to request information.

Should you wish to report a complaint or if you feel that Leapcure has not addressed your concern in a satisfactory manner, you may contact the Information Commissioner’s Office:

Email: icocasework@ico.org.uk

Address: Water Lane, Wycliffe House Wilmslow - Cheshire SK9 5AF UNITED KINGDOM

I confirm that I wish to be contacted about future clinical trial opportunities for Thyroid Eye Disease occurring in the United Kingdom and understand that this will involve submitting specific, minimal data relating to myself and my diagnosis and current symptoms with this condition.  Additionally, I understand this requires Leapcure, Inc. to store my data for a longer period of time, and confirm I wish them to keep it for the required 10 years.  I confirm that I have read the Privacy Policy and any Notice/Addendum and I agree to the processing of my data by Leapcure, Inc. for the purposes of communicating the availability of clinical trials for Thyroid Eye Disease.