Adnexi - Privacy Policy

Thank you for choosing to be part of our community at Adnexi Inc. ("Company", "we", "us", or "our"). We are committed to protecting your personal information and your right to privacy. If you have any questions or concerns about our notice, or our practices with regards to your personal information, please contact our Data Protection Officer using the details provided in Section 12.

When you visit our website https://www.adnexi.com ("Site"), and use our services, you trust us with your personal information. We take your privacy very seriously. In this privacy notice, we seek to explain to you in the clearest way possible what information we collect, how we use it and what rights you have in relation to it. We hope you take some time to read through it carefully, as it is important. If there are any terms in this privacy notice that you do not agree with, please discontinue use of our Site and services.

This privacy notice applies to all information collected through our website (such as https://www.adnexi.com), our services, information collected on behalf of our clients, and/or any related sales, marketing or events (we refer to them collectively in this privacy notice as the "Services").

Please read this privacy notice carefully as it will help you make informed decisions about sharing your personal information with us.

1. What Information Do We Collect?

Information automatically collected

In Short: Some information — such as IP address and/or browser and device characteristics — is collected automatically when you visit our Services.

We automatically collect certain information when you visit, use or navigate the Services. 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, browser and device characteristics, operating system, language preferences, referring URLs, device name, country, location, information about how and when you use our Services and other technical information. This information is primarily needed to maintain the security and operation of our Services, and for our internal analytics and reporting purposes.

Like many businesses, we also collect information through cookies and similar technologies.

Information Collected on Behalf of Our Clients (Nominated Professionals)

In Short: We may receive your professional information from a peer who identified you as a leader in your field in a survey conducted for a pharmaceutical sponsor.

In the course of providing services to our clients, such as pharmaceutical companies, we may process professional information about healthcare professionals that has been provided to us by a third party.

Specifically, if you received a letter from us regarding a peer nomination, it is because a peer identified you as influential or knowledgeable in your therapeutic area during a professional survey. The information collected about you through this process includes your:

Name
Professional Specialty
Affiliation

This information is collected by an independent research firm on behalf of our client (the "Sponsor") and subsequently provided to us for the purposes outlined in Section 2.

Information Collected on Behalf of Our Clients from Potential Clinical Trial Participants

In Short: If you apply for, are referred to, or are screened for a clinical study we support, we collect contact details and prescreening information (including certain health data) to determine basic eligibility and to coordinate with the study sponsor and participating sites. Some of this information is considered "sensitive" or "special category" data (e.g., health information) and is processed only with your consent or as otherwise permitted by law.

In the course of providing recruitment and prescreening services to our clients (such as pharmaceutical sponsors and clinical research sites), we may collect and process information about prospective clinical trial participants (or their caregivers) submitted through online forms (for example, a study "prescreener"), by phone/SMS/email, or via qualified recruitment partners. This information is collected by us or our recruitment partners on behalf of our client (the "Sponsor") and participating clinical sites for the purposes outlined in Section 2.

The information collected about you (or the individual you represent) may include:

Identification & Contact Information: Name, email address, mobile/telephone number, preferred contact method, and location details such as zip code/city/state/country.
Demographics: Age (or date of birth, if provided) and, where relevant for eligibility, basic characteristics (e.g., body weight thresholds).
Study Prescreen Responses (Health-Related/Sensitive Information): Condition/diagnosis details (e.g., whether there is a genetically confirmed diagnosis), relevant medical history (such as seizure history or cardiac conduction issues), current and prior medications or treatment to the protocol (e.g., 3,4-DAP or amifampridine phosphate), functional assessment results if provided (e.g., MFM scores), and other inclusion/exclusion responses necessary to assess preliminary eligibility.
Application Context: Whether you are applying for yourself or on behalf of a loved one; if applying on another person's behalf, your relationship to that person and, where required, documentation of your authority to act (e.g., as a parent, legal guardian, or legally authorized representative).
Communication & Scheduling Preferences: Your consent to be contacted, preferred times and channels for contact, and records of communications related to screening and scheduling.
Clinic/Site Preferences: Your preferred or nearby research site(s) and travel willingness, as applicable.
Technical Information: IP address and device information associated with the prescreener or scheduling tools, collected to maintain security and service integrity.
Any Other Information You Choose to Provide: Additional details you submit that you believe are relevant to your potential participation.

If the prospective participant is a minor, required information must be provided by a parent or legal guardian (or by a healthcare provider with appropriate authorization). Please do not submit a child's information unless you are the child's parent/legal guardian or otherwise legally authorized to do so. We may request documentation confirming your authority.

We collect and process this information as a service provider/processor to our Sponsor clients and participating sites, and we handle it in accordance with their instructions and applicable law. See Section 2 for how we use this information (for example, to assess preliminary eligibility, coordinate outreach, and facilitate referral to study sites).

Privacy Requests for Participants: To review, correct, or request deletion of prescreening information you submitted as a potential clinical trial participant (or on behalf of a participant), please use our Participant Privacy Rights Portal: Participant Privacy Rights Portal. Requests may also be routed to the Sponsor or participating research site where appropriate under applicable law and our role as their service provider/processor.

Data Controller Information: For prescreening information collected from potential clinical trial participants, the data controller is the pharmaceutical sponsor (the "Sponsor") on whose behalf we collect and process your data. Adnexi Inc. acts as a data processor/service provider under the Sponsor's instructions. The identity of the relevant Sponsor for each study is available upon request by contacting our Data Protection Officer at [email protected]. For general inquiries about how Adnexi handles your data in its capacity as processor, you may also contact our DPO using the details in Section 12.

2. How Do We Use Your Information?

In Short: We process your information for purposes based on legitimate business interests, the fulfillment of our contract with you, compliance with our legal obligations, and/or your consent.

We use personal information for a variety of business purposes described below. We use the information we collect or receive:

To facilitate account creation and logon process.
To send administrative information to you.
Fulfill and manage your orders.
Request Feedback.
To enforce our terms, conditions and policies for Business Purposes, Legal Reasons and Contractual.
To respond to legal requests and prevent harm.
To manage user accounts.
To deliver services to the user.
To respond to user inquiries/offer support to users.
To provide strategic analysis for our clients. For professional information collected via peer nomination, we use this data for internal strategic analysis to help our clients (the "Sponsors") better understand professional networks and expertise within a specific therapeutic area. This analysis is also used to identify individuals for potential future legitimate professional engagement opportunities.
For other Business Purposes. Such as data analysis, identifying usage trends, and to evaluate and improve our Services, products, marketing and your experience. We may use and store this information in aggregated and anonymized form.

Legal Bases for Processing (EEA, UK, and Switzerland). If you are located in the European Economic Area, the United Kingdom, or Switzerland, we process your personal information only where we have a valid legal basis under applicable data protection law. The legal bases we rely on depend on the type of information and the context in which we collect it:

Consent (Article 6(1)(a) GDPR): We process your prescreening responses and contact information based on the consent you provide when you submit a prescreener form. For health-related information, which constitutes special category data, we rely on your explicit consent under Article 9(2)(a) GDPR.
Legitimate Interests (Article 6(1)(f) GDPR): We process certain information (such as technical data for fraud prevention and security) based on our legitimate interests in maintaining the safety and integrity of our Services, provided these interests are not overridden by your rights.
Legal Obligation (Article 6(1)(c) GDPR): We may process your information where necessary to comply with a legal obligation to which we are subject.
Performance of a Contract (Article 6(1)(b) GDPR): Where we have a direct contractual relationship with you, we process information necessary to perform that contract.

You may withdraw your consent at any time via the Participant Privacy Portal or by contacting our Data Protection Officer. Withdrawal of consent does not affect the lawfulness of processing carried out prior to withdrawal.

3. Will Your Information Be Shared with Anyone?

In Short: We only share information with your consent, to comply with laws, to provide you with services, to protect your rights, or to fulfill business obligations.

We may process or share data based on the following legal basis: Consent, Legitimate Interests, Performance of a Contract, Legal Obligations, or Vital Interests.

More specifically, we may need to process your data or share your personal information in the following situations:

Vendors, Consultants and Other Third-Party Service Providers. We may share your data with third-party vendors, service providers, contractors or agents who perform services for us or on our behalf. For prescreener services, this includes Twilio, Inc., which processes phone numbers on our behalf for SMS delivery and phone verification, and Cloudflare, Inc., which provides security and bot-detection services. These providers act as sub-processors under our instructions and subject to data processing agreements.
Business Clients. In the case of professional information collected via peer nomination, we share our analysis and the underlying professional data with the pharmaceutical sponsor client who commissioned the research.
Business Transfers. We may share or transfer your information in connection with, or during negotiations of, any merger, sale of company assets, financing, or acquisition.

International Data Transfers. We are based in the United States. The location where your personal information is processed and stored depends on your region:

For users in the European Economic Area (EEA), the United Kingdom, and Switzerland: Your personal information is processed and stored on servers located in Frankfurt, Germany (EU). Because your data remains within the EEA (or is covered by the UK adequacy decision for the EEA), no international transfer mechanism is required for the primary storage and processing of your data. However, limited access to your data by our US-based team for support and administration purposes constitutes a transfer to the United States; for such transfers, we rely on the European Commission's Standard Contractual Clauses (SCCs) or, for the UK, the UK International Data Transfer Agreement (IDTA).
For users in all other regions (including the United States, Canada, Australia, New Zealand, Singapore, Mexico, and Argentina): Your personal information is processed and stored on servers located in the United States. If you are accessing our Services from outside the United States, please be aware that your personal information will be transferred to, stored, and processed in the United States, where data protection laws may differ from those in your jurisdiction. By submitting your information through our Services, you acknowledge this transfer.

For users in Argentina, your submission of information through our prescreener forms constitutes your explicit consent to the international transfer of your personal data to the United States, as required under Argentina's Personal Data Protection Law (Ley 25.326).

For more information about the safeguards we use, please contact our Data Protection Officer using the details in Section 12.

4. Do We Use Cookies and Other Tracking Technologies?

In Short: We use cookies and similar technologies on some of our prescreener pages for advertising measurement.

Some of our prescreener pages use the following technologies:

Google Ads (gtag.js): We use Google's advertising tag to measure the effectiveness of our recruitment campaigns. Google may set cookies and collect information such as your IP address, browser type, and page interactions. This data is processed by Google in accordance with Google's Privacy Policy.

You can manage cookie preferences through your browser settings. Most browsers allow you to refuse or delete cookies; however, doing so may affect the functionality of our Services. For users in the European Economic Area and United Kingdom, Google and Meta advertising cookies are set only with your consent where required by applicable law. You may opt out of personalized advertising through your Google Ad Settings or Meta Ad Preferences.

5. How Long Do We Keep Your Information?

In Short: We keep your information for as long as necessary to fulfill the purposes outlined in this privacy notice, unless otherwise required by law. For website users with accounts, we do not retain personal information for longer than 1 year after account termination. For clinical-trial prescreening information collected on behalf of Sponsors, we retain it for the duration of the relevant study and a reasonable period thereafter for audit and recordkeeping, or as required by law, or until you request its deletion where permitted and consistent with our obligations to our clients.

We will only keep your personal information for as long as it is necessary for the purposes set out in this privacy notice, unless a longer retention period is required or permitted by law (such as tax, accounting or other legal requirements).

For website users with accounts, no purpose in this policy will require us keeping your personal information for longer than 1 year past the termination of the user's account.

For professional information obtained via peer nomination, we will retain your information for as long as it is necessary for our client's strategic analysis and engagement purposes, or until you request its deletion.

When we have no ongoing legitimate business need to process your personal information, we will either delete or anonymize it.

For prescreening information collected on behalf of Sponsors, we retain the information for the duration of the relevant study and a reasonable period thereafter for audit and recordkeeping, or as required by law, or until you request its deletion where permitted by law and our obligations to our clients.

6. How Do We Keep Your Information Safe?

In Short: We aim to protect your personal information through a system of organizational and technical security measures.

We have implemented appropriate technical and organizational security measures designed to protect the security of any personal information we process. However, please also remember that we cannot guarantee that the internet itself is 100% secure.

7. Do We Collect Information from Minors?

In Short: We do not knowingly collect data from or market to children under 18 outside the context of clinical trial recruitment and prescreening. For studies that include minors, we collect a child's information only from a parent or legal guardian (or other legally authorized representative) and only with the consents and authorizations required by law.

We do not knowingly solicit data from or market to children under 18 years of age outside the context of clinical trial recruitment and prescreening services. For prospective studies that permit minors, we collect information about individuals under 18 only from a parent or legal guardian (or a legally authorized representative) and only with the consents and authorizations required by applicable law. If you submit a child's information and you are not authorized to do so, please contact us at [email protected] so we can take appropriate action. We may request documentation confirming your authority. We do not knowingly contact minors directly about studies; our communications are directed to the parent, legal guardian, or legally authorized representative.

8. What Are Your Privacy Rights?

In Short: You have rights that allow you greater access to and control over your personal information. Nominated Professionals should use our Professional Privacy Rights Portal, and Potential Clinical Trial Participants should use our Participant Privacy Rights Portal. You can also contact us using the information in Section 12.

In some regions (like the European Economic Area and certain U.S. states), you have certain rights under applicable data protection laws. These may include the right:

(i) Right to Know/Access: The right to request access and obtain a copy of your personal information.
(ii) Right to Delete: The right to request the deletion of your personal information, subject to certain exceptions.
(iii) Right to Correct: The right to request correction of inaccurate information we hold about you.
(iv) Right to Opt-Out of Sale or Sharing: The right to opt-out of the "sale" or certain types of "sharing" of your personal information.
(v) Right to Restrict Processing: The right to restrict the processing of your personal information.
(vi) Right to Data Portability: If applicable, the right to data portability.

To make a request, please use the appropriate portal below or the contact details in Section 12.

Professional Privacy Rights Portal (Nominated Professionals): Professional Privacy Rights Portal
Participant Privacy Rights Portal (Potential Clinical Trial Participants): Participant Privacy Rights Portal

We will consider and act upon any request in accordance with applicable data protection laws. Depending on our role (e.g., service provider/processor to a Sponsor or research site), we may need to direct your request to the appropriate party or coordinate with them to fulfill it.

Right to Lodge a Complaint. If you are located in the European Economic Area, the United Kingdom, or Switzerland, you have the right to lodge a complaint with your local data protection supervisory authority if you believe that our processing of your personal information violates applicable law. In the United Kingdom, the relevant authority is the Information Commissioner's Office (ICO) at https://ico.org.uk. In the EEA, you may find your local authority at https://edpb.europa.eu/about-edpb/about-edpb/members_en. In Canada, you may contact the Office of the Privacy Commissioner of Canada (OPC) at https://www.priv.gc.ca. In Australia, the Office of the Australian Information Commissioner (OAIC) at https://www.oaic.gov.au. In New Zealand, the Office of the Privacy Commissioner at https://www.privacy.org.nz. In Singapore, the Personal Data Protection Commission (PDPC) at https://www.pdpc.gov.sg. In Argentina, the Agencia de Acceso a la Información Pública (AAIP) at https://www.argentina.gob.ar/aaip. In Mexico, the Instituto Nacional de Transparencia, Acceso a la Información y Protección de Datos Personales (INAI) at https://home.inai.org.mx. We would appreciate the opportunity to address your concerns before you contact a supervisory authority, and invite you to reach out to our DPO first.

9. Controls for Do-Not-Track Features

Most web browsers include a Do-Not-Track ("DNT") feature. As no uniform technology standard for DNT signals has been finalized, we do not currently respond to DNT browser signals.

10. Do California Residents Have Specific Privacy Rights?

In Short: Yes. California residents have specific rights under the CCPA/CPRA (such as the rights to know/access, delete, correct, and to opt-out of sale or sharing). Prescreening health information you provide may be classified as "sensitive personal information." We process such information as a service provider/processor on behalf of Sponsors and clinical sites, with appropriate consent and purpose limitations, and honor applicable rights, including — where relevant — the right to limit the use and disclosure of sensitive personal information. Nominated Professionals should use our Professional Privacy Rights Portal and Potential Clinical Trial Participants should use our Participant Privacy Rights Portal to exercise their rights.

If you are a California resident, you have the following rights:

Right to Know/Access: You have the right to request information about the categories and specific pieces of personal information we have collected about you, the sources of that information, the business purpose for collecting it, and the third parties with whom we share it.
Right to Delete: You have the right to request the deletion of your personal information that we hold, subject to certain exceptions.
Right to Correct: You have the right to request the correction of inaccurate personal information.
Right to Opt-Out of Sale or Sharing: Under the California Consumer Privacy Act (CCPA/CPRA), providing professional information to our clients through the peer nomination research may be considered a "sale" or "sharing." You have the right to opt-out of this activity.
Right to Non-Discrimination: We will not discriminate against you for exercising any of your CCPA/CPRA rights.

To exercise your California privacy rights, please use the appropriate portal:

Professional Privacy Rights Portal (Nominated Professionals): Professional Privacy Rights Portal
Participant Privacy Rights Portal (Potential Clinical Trial Participants): Participant Privacy Rights Portal

You may also contact us using the information in Section 12. Where we act as a service provider/processor to a Sponsor or participating research site, we may coordinate with or redirect your request to that party consistent with the CCPA/CPRA.

California's "Shine The Light" law also permits users who are California residents to request and obtain from us, once a year, information about categories of personal information (if any) we disclosed to third parties for direct marketing purposes.

Prescreening Information and Sensitive Personal Information: Prescreening information you provide in connection with potential participation in a clinical study (including health-related details) may constitute "sensitive personal information" under the CCPA/CPRA. When we collect and process prescreening information on behalf of Sponsors and participating research sites, we act as a service provider/processor and use it only to perform the services you request (e.g., to assess preliminary eligibility, coordinate contact, and facilitate referral) or as otherwise permitted by law and our agreements. Where applicable, you may exercise the Right to Limit the use and disclosure of sensitive personal information via the appropriate portal above or by contacting us as described in Section 12; please note that we may continue to process such information as necessary to provide requested services, to help ensure security and integrity, to comply with legal obligations, or as otherwise permitted by the CCPA/CPRA.

11. Do We Make Updates to This Policy?

In Short: Yes, we will update this policy as necessary to stay compliant with relevant laws.

We may update this privacy notice from time to time. The updated version will be indicated by a "Last Updated" date. We encourage you to review this privacy notice frequently.

12. How Can You Contact Us About This Policy?

If you have questions or comments about this policy, you may contact our Data Protection Officer (DPO), Coby Shpilberg.

Email us at: [email protected]

How Can You Review, Update, or Delete the Data We Collect from You?

You have the right to request access to the personal information we collect from you, change that information, or delete it in some circumstances.

Nominated Professionals: Use our Professional Privacy Rights Portal: Professional Privacy Rights Portal
Potential Clinical Trial Participants: Use our Participant Privacy Rights Portal: Participant Privacy Rights Portal

Alternatively, you may email our Data Protection Officer at [email protected]. We will respond to your request within 30 days (or within 20 days for requests made under Mexico's Federal Law on Protection of Personal Data, Ley Federal de Protección de Datos Personales en Posesión de los Particulares), or as otherwise required by applicable law. Where we act as a service provider/processor to a Sponsor or participating research site, we may coordinate with or redirect your request to that party as required.