We prioritize the protection of your data. Your information is encrypted and stored securely, and access is strictly controlled. We adhere to stringent privacy and security protocols, complying with all relevant regulations to ensure your data remains confidential and protected at all times. Your privacy is our top priority.

You will help improve the understanding of these common symptoms. The information that you provide may help you understand your own condition, but it is the strength of collecting information from many participants and family members that has the potential to provide researchers with knowledge that should improve the future health of your family and others. This registry will gather information about the alternative causes of common ear and facial symptoms to help improve their diagnosis and treatment.

You will be asked to answer questions about your health history and patient experience through a secure online portal. Importantly, this registry will ask you to update your experiences annually or biannually over years. Along the way, we will be sharing our findings with you.

The goal of the registry and its council of researchers is to analyze, then draw conclusions from the information that is provided by the registrants and finally publish those findings. Other researchers will have the opportunity to request access to the registry information, but this is strictly controlled through an approval process to protect patient privacy. Common uses of registry data include: studying the relationships between different symptoms, identifying treatments that are either effective or not for specific symptoms, and developing new standards of care. Researchers may also request new studies to look at potential diagnostic tests or tools and innovative treatments. These requests will be vigorously screened for their value. Registry members would be invited to participate in any additional studies and given the option to either decline or sign a separate consent in which the details of those studies would be explained.

Absolutely. Your information will be given a coded number. Scientists and other stakeholders studying migraine, headache, sinus, vestibular, and auditory disorders may approach the registry to ask for access. If granted they will be able to obtain data for use in expanding their research studies, but they will not be able to access your identifying information. If you are eligible for a clinical trial, the research team will reach out to you directly to ask for your permission. Many security measures are in place to ensure your information is only used in ways that you have agreed to, and that identifying information can never be released without consent.

If you would like to participate in the registry, you will need to register and provide your consent. Please create an account by registering at www.headsregistry.lumiio.com and fill out and sign the consent form. If you have any questions, please contact us at info@lumiio.com