NOW ENROLLING FOR RESEARCH STUDY
Importance of Patient-Owned Data
With patient-owned data:
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You will always have a say in what data is reported and collected and who will be able to access it
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You can change your mind at any time and your data will be deleted
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You can have a digitized record of your entire medical journey
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Your data cannot be duplicated, and your experience with the study will be tracked through CridID
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No one will be paid to collect your data and it will not be sold without your consent - it will always be owned by PBC Research Foundation
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Your data will be viewed as non-biased by regulatory boards such as the FDA - our CEO is a patient and is not being paid to collect this data
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Non-duplicitive data will move the rare liver disease space forward and will supplement data in clinical trials and other research centers
Frequently Asked Questions
1. Is my information secure and safe?
Yes, our platform, The Matrix is HIPAA and GDPR compliant,. Your name will never be disclosed or linked to your data. All answers will remain
confidential, and we will never sell your name, email, or answers.
2. What if I only want to participate in part of the study?
You chose what you want to participate in and what you don’t want to participate in.
3. What happens if I change my mind later?
You own your data, and you can keep your digitized record, stop our data collection, or delete your record.
4. How is this different than other surveys?
Other surveys, such as those on social media platforms or apps, cannot always guarantee data safety and security because they are not on a HIPAA or GDPR-compliant platform. Since anyone with an email address can complete many of those surveys, data duplication cannot be controlled. It is also possible that your answers and information will be sold to others, whereas we will never compromise your identity.