Superficial Siderosis Patient Registry

Remember, your participation in the registry is voluntary, and you can withdraw at any time. Your information will be kept confidential and used only for the purposes outlined in the informed consent form. By participating in the Superficial Siderosis Patient Registry, you are contributing to a better understanding of this condition and helping to advance research and treatment options.

Thank you for your participation!

Website Registration: The first step to joining the Superficial Siderosis Patient Registry is to complete the website registration. This will grant you access to the member area of the website. To register, you must provide basic information, such as your name, email address, and contact details.

Set Username and Password: After successfully registering, you will be prompted to set your username and password. These will be your credentials for logging into the member area of the website. Make sure to choose a strong password and a username that you can easily remember.

Log In: Once you have set your username and password, you can log in to the member area using these credentials. If you have trouble logging in, you can recover your username or reset your password.
Review and Complete the Informed Consent

Consent Form: After logging in, the next step is to review and complete the informed consent form. This form provides information about the registry, participation, potential risks and benefits, and your rights as a participant. It’s essential to read this form carefully and ensure you understand everything. If you have any questions, don’t hesitate to contact the registry administrator.

Complete Nine Modules: The final step is to complete nine informational modules. These modules will ask for more detailed information about your medical history, symptoms, treatments, and experiences with Superficial Siderosis. The information you provide in these modules is invaluable for research and improving treatment options.