Privacy Policy

AminoChain, Inc. and its affiliates and subsidiaries (“AminoChain,” “we,” “us,” or “our”) respect your privacy and are committed to protecting information entrusted to us.

This Privacy Notice (“Notice”) describes how AminoChain collects, uses, discloses, and protects Personal Information when you interact with our websites, mobile applications, web applications, research platforms, and related services that link to this Notice (collectively, the “Services”).

Our Services include the AminoChain Donor Portal, which supports participation in research studies and longitudinal research programs; the AminoChain Donor Management System (“DOMS”), which allows authorized researchers, study personnel, healthcare organizations, and research partners to manage approved research activities; our research registry and biospecimen repository infrastructure; AminoChain websites and other online services; and related participant, researcher, partner, and administrative services.

This Notice applies to research participants and prospective participants, researchers and study personnel, representatives of healthcare and research organizations, business partners, website visitors, and other individuals who interact with our Services.

Research Participation

If you participate in an AminoChain research study or research program, the collection and use of your research information and biological samples will also be governed by the applicable informed consent, HIPAA authorization, and IRB-approved research protocol. If those research documents differ from this Privacy Notice with respect to a specific research activity, the language in the research documents will apply.

Personal Information We Collect

“Personal Information” generally means information that identifies, relates to, or could reasonably be linked with an individual. The specific definition may vary under applicable law.

The Personal Information we collect depends on how you interact with AminoChain and may include your name, contact information, date of birth, demographic information, account information, and other information you provide to us.

Health Information. If you participate in research, we may collect information relevant to the research in which you participate, such as your health and medical history, diagnoses, symptoms, medications and treatments, medical records, laboratory and diagnostic information, family medical history, lifestyle information, demographic information, patient-reported outcomes, questionnaire and survey responses, study visit information, and other information collected as part of the research. Where authorized, we may also obtain relevant health information or medical records from healthcare providers, hospitals, laboratories, electronic health record systems, research partners, or other sources.

Biological Samples and Research-Derived Information. Research participants may provide biological samples, such as blood, saliva, tissue, stool, urine, or other specimens collected as part of a research study. Analysis of these samples may generate additional research information, including genetic or genomic information and other molecular, laboratory, or research-derived data. The collection, analysis, use, and storage of biological samples and research-derived information will be consistent with the applicable research documents.

Researcher and Professional Information. If you use the AminoChain Donor Management System (“DOMS”) or otherwise access our Services on behalf of a research institution, healthcare organization, study sponsor, company, or other organization, we may collect your name, professional contact information, organization, title or role, study affiliation, account permissions, communications with AminoChain, and activity within the Services.

Account Information. When you create or use an account, we may collect information such as your username or account identifier, authentication information, account role, study or collection identifiers, preferences, and records of activity within the Services.

Communications. We may collect information you provide when communicating with us through email, telephone, text message, the Donor Portal, DOMS, online forms, support requests, or other communications.

Compensation and Rewards Information. If you are eligible to receive compensation or rewards for research activities, we may collect information necessary to administer those payments or rewards, such as eligible activities, amounts, payment status, and tax-related information where required by law.

Device and Usage Information. When you use our online Services, we may automatically collect technical and usage information such as your IP address, browser and device type, operating system, approximate location derived from your IP address, dates and times of access, features you use, authentication events, and diagnostic, security, and audit information.

How We Collect Personal Information

We may collect Personal Information directly from you when you create an account, participate in research, communicate with us, or use the Donor Portal, DOMS, or our other Services. We may also receive or generate Personal Information through research activities, including from healthcare providers, research institutions, laboratories, research partners, biological sample analysis, and other authorized sources, as permitted by applicable research documents and law. We may collect certain technical and usage information automatically when you use our websites, applications, or other Services, including through cookies, system logs, and similar technologies.

How We Use Personal Information

We may use Personal Information to provide, operate, secure, and improve our Services, including creating and managing accounts, administering the Donor Portal and DOMS, managing access and permissions, communicating with users, providing study-related resources, and supporting research activities.

Where permitted by applicable research documents and law, we may use Personal Information to conduct and support research, including managing research participants and studies, collecting and analyzing health information and biological samples, administering surveys and patient-reported outcomes, maintaining research registries and biospecimen repositories, conducting longitudinal research, and identifying or contacting participants about additional research opportunities. The specific uses of your information for research will be described in the applicable research documents.

We may use Personal Information to communicate with you about your account, research participation, study activities, questionnaires, appointments, compensation or rewards, research opportunities, and other administrative or research-related matters.

For researchers and other professional users, we may use Personal Information to administer DOMS and other Services, manage access and permissions, support study operations and collaboration, and maintain appropriate operational and regulatory records.

We may also use Personal Information to analyze and improve our Services and research operations, maintain security and audit records, prevent fraud or misuse, comply with legal and regulatory obligations, enforce our agreements and policies, and protect the rights and safety of AminoChain and others.

How We Share Personal Information

We may share Personal Information as permitted by applicable law, research documents, and agreements.

We may share information with authorized research teams and institutions, including investigators, study sites, healthcare providers, research staff, and other organizations involved in conducting or supporting research.

Where permitted by applicable research documents, research data and biological samples may be shared with qualified researchers and research organizations, including academic, nonprofit, government, biotechnology, pharmaceutical, and other research organizations. Research may be academic or commercial. Where appropriate, information shared for research will be coded or de-identified and subject to applicable agreements and safeguards.

We may share information and biological samples with laboratories, biorepositories, and other research service providers that assist with activities such as sample collection, processing, storage, sequencing, laboratory analysis, data generation, and other research activities.

We may also share Personal Information with service providers that help us operate our Services, such as providers of cloud hosting, data storage, security, authentication, communications, analytics, and participant compensation.

We may disclose information to IRBs, regulators, auditors, government authorities, and other authorized parties as required or permitted by law or as necessary to oversee research, protect our Services and users, investigate misuse, enforce our agreements, or comply with legal obligations.

We may also disclose Personal Information when you direct or authorize us to do so, or as necessary in connection with a merger, acquisition, financing, sale of assets, or similar corporate transaction, subject to applicable requirements.

We do not share, sell, or provide your mobile phone number, text messaging opt-in information, or messaging consent to third parties or affiliates for their marketing or promotional purposes. We may share this information with service providers that help us deliver text messages and related communications on our behalf, but only as necessary to provide those services.

Research Data, Coded Data, and De-Identified Information

AminoChain may code research information by replacing direct identifiers with a participant or study identifier and maintaining identifying information separately where appropriate. Coded information may still be linked to an individual by authorized personnel with access to the necessary linking information.

We may also create aggregated or de-identified information that does not reasonably identify an individual. Subject to applicable law and research requirements, we may use and share this information for research, scientific, operational, analytical, and business purposes.

Commercial Research

Research involving data or biological samples made available through AminoChain may include research conducted by biotechnology companies, pharmaceutical companies, and other commercial organizations.

AminoChain may receive research funding, service fees, licensing fees, or other compensation in connection with research programs and collaborations. Any participant rights relating to discoveries, intellectual property, royalties, or commercial products resulting from research will be described in the applicable informed consent and research documents.

AminoChain does not use participant health or research information for behavioral advertising.

Research Withdrawal and Privacy Requests

If you participate in research, you may withdraw as described in the applicable informed consent. You may also request assistance with withdrawing from research, deleting your AminoChain account, or deleting eligible Personal Information by contacting us using the information in the Contact Us section below.

After withdrawal, we will generally stop collecting new research information or biological samples from you and stop future research contact, as applicable. Information or samples already collected, used, shared, or incorporated into research may continue to be retained or used as permitted by the applicable research documents and law.

Text Messages and Electronic Communications

If you opt in to receive text messages from AminoChain, we may use your mobile phone number to send study-related, research-related, account-related, and other communications consistent with your consent. Message frequency may vary. Message and data rates may apply.

We do not share, sell, rent, or provide your mobile phone number, text messaging opt-in information, or messaging consent data to third parties or affiliates for their marketing or promotional purposes.

We may use service providers, including telecommunications and messaging providers to deliver messages on our behalf. These providers may process your mobile phone number and related messaging information only as necessary to provide these services.

You may opt out of text messages at any time by replying STOP. For help, reply HELP or contact us using the information in the Contact Us section below.

Opting out of text messages does not withdraw you from a research study or program, revoke a HIPAA Authorization, or close your AminoChain account. To withdraw from research or revoke an authorization, please follow the applicable research documents or contact us using the information in the Contact Us section below.

Cookies and Similar Technologies

We and our service providers may use cookies and similar technologies to operate, secure, and improve our websites and Services, including to authenticate users, maintain login sessions, remember preferences, understand how our Services are used, and diagnose technical issues.

You can control certain cookies through your browser settings, although disabling cookies may affect the functionality of our Services.

Data Security

AminoChain uses administrative, technical, and physical safeguards designed to protect Personal Information and research information from unauthorized access, use, disclosure, alteration, or loss. These safeguards may include access controls, encryption, audit logging, secure infrastructure, and physical protections for biological samples and research facilities.

No method of electronic transmission or storage is completely secure, and we cannot guarantee absolute security.

HIPAA and Health Information

Certain health information processed in connection with research may be subject to HIPAA or other health privacy laws. Where AminoChain receives or uses Protected Health Information, we handle it in accordance with applicable law, agreements, and research documents.

If you participate in research, your HIPAA Authorization or other research documents may provide additional information about how your health information may be collected, used, disclosed, and retained.

How Long We Retain Information

We retain Personal Information for as long as reasonably necessary for the purposes for which it was collected and to meet applicable legal, regulatory, contractual, research, security, and operational requirements.

Research information and biological samples may be retained for long-term or future research where permitted by the applicable research documents and law.

Your Privacy Rights

Depending on where you live, you may have certain rights regarding your Personal Information, including the right to access, correct, delete, or obtain a copy of certain information. These rights may be subject to exceptions under applicable law. To exercise a privacy right, please contact us using the information in the Contact Us section below.

International Users

AminoChain is based in the United States, and Personal Information collected through our Services may be stored and processed in the United States or other countries where we or our service providers operate.

If you are located in the European Economic Area (“EEA”), United Kingdom, or another jurisdiction with applicable data protection requirements, we will process your Personal Information in accordance with applicable law. Where Personal Information is transferred internationally, we will use appropriate safeguards as required by applicable law, which may include approved contractual protections or other lawful storage and transfer mechanisms.

Third-Party Services

Our Services may contain links to or integrate with services provided by third parties. When you interact directly with an independent third-party service, that organization’s privacy practices may apply, and we encourage you to review its privacy notice.

Changes to This Notice

We may update this Privacy Notice from time to time as our Services, research activities, and legal obligations evolve. When we do, we will update the “Last Updated” date above and provide any additional notice required by law.

Changes to this Privacy Notice do not change the terms of an applicable informed consent, HIPAA authorization, or other research document.

Contact Us

If you have questions about this Privacy Notice, our privacy practices, your Personal Information, or would like to exercise an applicable privacy right, please contact:

Privacy and research-related requests:
privacy@aminochain.io

Technical support and account assistance:
support@aminochain.io

If you participate in a research study, your informed consent or other study materials may also provide contact information for study-specific questions, concerns, withdrawal requests, or other research-related matters.