Effective date
14 February 2025
Privacy Policy
1. Introduction
Welcome to the CELLEBRATE Registry Website (the "Website"). This Website is managed by Avania on behalf of the CELLEBRATE Registry (the “Study”) to provide potential participants with study-related information and facilitate initial contact with the study team.
Your privacy is important to us. This Privacy Policy explains how we collect, use, store, and share your personal data when you visit this Website and submit your contact information.
2. Who We Are
Avania ("we," "our," or "us") is managing this Website and processing data submitted by potential study participants. We are a Contract Research Organization (“CRO”) supporting the Study and are responsible for handling the personal information collected through this Website.
For privacy-related inquiries, you can contact us at: dataprivacy@avaniaclinical.com
3. What Personal Data We Collect
When you visit this Website and express interest in the study, we may collect the following information:
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Your First and Last name
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Your email address
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Your phone number
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Your previous CELLEBRATE Study site name
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Your previous CELLEBRATE Study participant number (optional)
This Website does not collect or process sensitive health data directly. If you decide to proceed with the study, further data collection and processing will be governed by a separate informed consent process.
4. How We Use Your Data
We collect and process your personal data for the following purposes:
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To determine your interest in the Study.
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To forward your contact details to the appropriate study site investigator or coordinator tied to the site name you entered.
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To respond to your inquiries about the Study.
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To comply with applicable legal and regulatory requirements.
We do not use your data for marketing purposes or share it with third parties beyond what is necessary for study enrollment.
5. Legal Basis for Processing
We process your personal data based on:
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Your consent, given when you voluntarily submit your information.
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Legitimate interest in managing the Study website and facilitating patient recruitment.
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Compliance with applicable legal and regulatory obligations.
You may withdraw your consent at any time by contacting us at dataprivacy@avaniaclinical.com
6. Who We Share Your Data With
We only share your personal data with:
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Authorized study personnel responsible for patient outreach and screening.
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Study site investigators or coordinators associated with the site name you provide.
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Regulatory bodies if required by law.
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Third-party service providers assisting with website hosting and data storage, who are contractually obligated to protect your data.
We do not sell or rent your personal information to third parties.
7. Cookies & Tracking Technologies
This Website may use cookies or similar tracking technologies to enhance user experience, monitor Website usage, and improve functionality. You can manage your cookie preferences through your browser settings.
8. Data Retention
Your data will be retained only as long as necessary to facilitate study enrollment or as required by regulatory guidelines. If you do not proceed with the study, your data will be deleted.
9. Data Security
We implement appropriate technical and organizational measures to protect your personal data from unauthorized access, alteration, disclosure, or destruction. This includes, but is not limited to:
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Secure storage of data on protected servers.
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Restricted access to authorized personnel only.
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Encryption and data anonymization where applicable.
10. Children's Personal Information
None of the content and information on the Website is targeted toward children under 18 years of age. Avania does not knowingly collect information from children under the age of 18 unless we have obtained consent from a parent or guardian, or such collection is subject to a separate agreement with us which specifically provides for us to obtain such information.
11. Your Rights
As a U.S. resident, you may have the following rights under applicable U.S. privacy laws:
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Right to access your personal data.
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Right to correct inaccurate or incomplete data.
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Right to withdraw consent.
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Right to request deletion of your data.
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Right to restrict processing.
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Right to data portability.
To exercise these rights, please contact us at dataprivacy@avaniaclinical.com
12. Special Notice to California Residents – Your California Privacy Rights
If you are a resident of California, you have certain additional rights regarding your personal data under the California Consumer Privacy Act (CCPA). These rights include:
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The right to request details about the categories and specific pieces of personal information we have collected about you.
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The right to know the sources from which we obtained your personal information and the purposes for which we use it.
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The right to request that we delete your personal data, subject to certain legal exceptions.
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The right to understand whether your personal information is shared with third parties and, if applicable, to whom.
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The right to opt out of any potential sale of your personal data, though Avania does not sell personal information.
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The right to receive equal treatment and not be discriminated against for exercising your privacy rights.
If you wish to exercise any of these rights, you may submit a request by contacting us at dataprivacy@avaniaclinical.com. We will verify and respond to your request in accordance with applicable law.
13. Changes to This Privacy Policy
We may update this Privacy Policy periodically. Any changes will be posted on this page with the updated effective date.
14. Contact Us
If you have any questions about this Privacy Policy or how your data is handled, please contact: dataprivacy@avaniaclinical.com
By submitting your information on this Website, you acknowledge that you have read and understood this Privacy Policy.