TOFU information brochure
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Thank you for your interest in our registry of treatment exit options for non-infectious uveitis. In a registry, disease progression data is collected and stored in a database. This type of study is particularly well suited to rare diseases. Data entry does not in any way change the treatment chosen by your doctor, whether any or which medication is prescribed and the intervals of further
checks. The treatment data and the course of treatment are simply stored and evaluated in the database. Your data will be handled in compliance with the legal requirements concerning data
No specified medications will be prescribed to you and no additional examinations will be carried out during the study. You can additionally consent to the transfer and evaluation of your
pseudonymised image data. This image data concerns examinations that are performed as part of the routine examination of your eyes for diagnosis or monitoring of your disease activity. The registry does not result in any additional examinations.
The data collected in this registry will be scientifically evaluated at certain intervals to bundle data on therapies and their effect from all over Germany and to derive therapy recommendations and
guidelines for treatment. These evaluations will be published in scientific journals and presented at congresses, but without mentioning patient names. In the long term, we hope to be able to improve the overall clinical outcomes.
As part of the registry there will be a direct participant survey (patient module) to record the effects of uveitis on daily life and quality of life. Registry participants will be sent a link to the patient
module twice a year. This information is also recorded anonymously and therefore cannot be retrospectively assigned to the participants.