We are committed to developing devices with input from the communities and groups we aim to serve. Until now, we’ve received input from a small number of individuals with various levels of motor impairment. The Patient Registry will allow us to understand the needs of a larger, more diverse group of individuals with various conditions. The Patient Registry will also help us determine your preliminary eligibility for future Neuralink clinical trials.
Who can participate in the Patient Registry?
Anyone within the United States who is at least 18 years old and the age of majority in their state, who is able to consent, and who has quadriplegia, paraplegia, vision loss, hearing loss, and/or the inability to speak, is invited to participate in the Patient Registry.
What benefit do I gain from adding my information to the Neuralink Patient Registry?
While there is no direct benefit from participating in the Patient Registry, you may benefit in the future from research stemming from the Patient Registry and any commercial products that may result. If you submit a completed Patient Registry application, we may also contact you or your legally authorized representative about future Neuralink clinical trials you may be eligible for, when those clinical trials become available.
What information is collected through the Patient Registry?
We will ask about current and past medical information, demographics, education, work, and the assistive technologies you use. To participate in the Patient Registry, we will ask you for your authorization to release your medical records. If you have a legally authorized representative, we will also collect their contact information so they may complete the application on your behalf.
How will my information be used and by whom?
We will not sell the data you provide to any third party. We may share such data with Neuralink’s affiliates, third parties acting on behalf of Neuralink and research partners. The information you provide may be used to determine your potential eligibility for future Neuralink clinical trials as well as for research purposes and potential product development. Your contact information may also be used to communicate with you (or your legally authorized representative) about your Patient Registry application, Neuralink, future Neuralink clinical trials, or Neuralink’s technology. If required, we may also share information you provide with regulatory agencies, such as an institutional review board (IRB), to comply with Neuralink’s regulatory obligations or to comply with the law. Only authorized Neuralink personnel with the appropriate privacy and confidentiality training will be able to access the identifiable personal information you provide. We may create de-identified data from the identifiable personal information you provide by excluding information that personally identifies you. This de-identified data may be presented at scientific, professional, or company meetings or published in scientific journals.
Does adding my information to the Patient Registry help me qualify for future clinical trials?
We may use the information you provide to determine your preliminary eligibility for future Neuralink clinical trials once they become available. Participation in the Patient Registry is however not a prerequisite or sufficient for later participation in a Neuralink clinical trial. You will not be considered enrolled into any future Neuralink clinical trials and/or research study by participating in the Patient Registry. You will be asked to review and sign a separate informed consent document before participating in any future Neuralink clinical trial. Neuralink does not currently have any clinical trials available for enrollment.
Can you tell me about upcoming clinical trials?
Neuralink does not currently have any clinical trials available for enrollment. If you participate in the Patient Registry and we determine that you meet preliminary eligibility for future clinical trials, we may contact you to inform you of these trials once they become available.
How do I withdraw my application from the Patient Registry?
Upon providing your consent to participate in the Patient Registry, you have the right to withdraw your consent at any time by contacting us at patientregistry@neuralink.com. Upon receiving your withdrawal request, Neuralink will stop any use and further collection of your data (e.g., obtaining authorized medical records) as soon as reasonably possible, and will permanently remove and delete your records from the Patient Registry within 90 business days of receipt of such request. Upon receipt of your withdrawal request, Neuralink will also request that third parties with whom it shared Patient Registry data stop using the data and delete such data in a reasonable timeframe. While your withdrawal will be effective upon receipt by Neuralink, it will not be effective to the extent that Neuralink or others have already relied upon this consent, which means that any processing of your data prior to the receipt of your withdrawal request cannot be undone.
Apply for Consideration
If you’re interested in helping us develop general-purpose brain-computer interfaces with the potential to help restore independence to individuals with disabilities, consider joining the Patient Registry. If you have any questions or concerns, feel free to reach out to patientregistry@neuralink.com.