Entity collecting your personal information: Neuralink Corp. (“Neuralink”, "we", "us")
Joining the Patient Registry is not a prerequisite for later participation in a Neuralink clinical trial. You will not be considered enrolled in any current or future Neuralink clinical trial or research by joining the Neuralink Patient Registry. You will be asked to review and sign a separate consent document before participating in any Neuralink clinical trial or research.
We reserve the right to update this privacy information at any time and we will provide you with a new privacy notice when we make any substantial updates. We may also notify you in other ways from time to time about the use of your personal information.
As part of the Patient Registry we collect and use your personal information to:
If you meet preliminary eligibility for current and/or future clinical trials, we may contact you to inform you of those trials and provide you information on how to apply to participate. However, meeting preliminary eligibility does not mean that you have been screened for a specific trial or that you are enrolled in a Neuralink clinical trial; rather, it means that based on the information you shared we believe you may qualify for a Neuralink clinical trial and may contact you accordingly.
You will not be paid to join the Patient Registry or to complete the Patient Registry Survey.
Neuralink will collect the personal information you provide to us:
The personal information you provide in the Patient Registry Survey will only be collected by Neuralink if you click ‘Continue’ under each section of the Patient Registry Survey.
We also collect the personal information of the person who may act on your behalf (such as your caregiver or legal representative) for the purpose of the Patient Registry when such information is provided by you when you sign up to join the Patient Registry. You must have their permission to provide us with their personal information.
We use your personal information for the purposes of managing the Patient Registry and interacting with you on the basis of your explicit consent. We may also use your personal information to comply with any legal obligations that apply to Neuralink in relation to the Patient Registry, for example in managing our compliance with applicable data privacy laws.
Neuralink will retain the personal information that you provide to us for as long as it considers the running of clinical trials or until you request to withdraw from the Patient Registry or request to delete your personal information.
Only authorized Neuralink personnel with the appropriate privacy and confidentiality training who have a need to access your personal information for the purpose of the Patient Registry will be able to access the identifiable personal information you provide.
To confirm your potential eligibility in Neuralink clinical trials, we may share your personal information (including your contact information and medical information) to research teams responsible for the conduct of Neuralink clinical trials.
We may also create anonymized information from the personal information you provide by excluding information that personally identifies you. We may use this anonymized information for internal research and product development, or any other legal purpose.
We collect your personal information directly from the United States, which is not a restricted transfer of your personal information. We will also share your personal information with our service providers in the U.S. who support the delivery of the Patient Registry and are necessary to achieve the aims of the Patient Registry. Where applicable, we ensure appropriate transfer solutions are in place to protect the transfer of your personal information.
You have the right to refuse to answer any question of the Patient Registry Survey, however, if these questions are mandatory, then you will not be able to join the Patient Registry. You can manage the personal information you provided in the Patient Registry Survey by logging into the Patient Portal.
If you do not want to be contacted by Neuralink in the future, you may opt-out at any time of such communications by contacting us at patientregistry@neuralink.com.
Where applicable, you have other rights such as the right to ask us for a copy of your personal information, and the right to request the correction or deletion of the personal information you provided. These rights may be limited, for example, if fulfilling your request would reveal personal information about another person.
If you wish to exercise any of these rights, please contact us at patientregistry@neuralink.com.
You can contact our Data Protection Officer at dpo@neuralink.com if you have any concerns or complaints about how we handle your personal information. We will do our best to address your concerns.