Registry participation as clinical site

Thank you for your interest in the TOFU registry!

TOFU is a registry for patients with non-infectious non-anterior uveitis, that is designed to monitor their long-term disease course including treatment outcomes with disease-modifying anti-rheumatic drugs (DMARDs). The aim of the registry is to use the data collected to improve standardisation of treatment and to develop recommendations for treatment guidelines, especially for treatment exit strategies for patients with quiescent disease.

Participating clinical sites have considerable expertise in uveitis management and are often super-specialized regional service providers. They recruit suitable participants and regularly enter data into the registry.

The central TOFU project management is located in Bonn, Germany, and provides support in obtaining ethics votes, putting legal agreements in place, provides the web-based eCRF for data entry and training on how to enter the data as well as a lot of additional support. Within the European Economic Area (EEA), some costs for obtaining ethical votes as well as for data entry can be reimbursed. Outside the EEA unfortunately no costs can be reimbursed.

Patient information and consent forms are currently available in seven different languages (German, English, French, Spanish, Portuguese, Italian and Polish), but may need to be adapted to each additional clinical site’s requirements even if the respective language version is available. Additional language versions can be made available as required.

TOFU welcomes additional clinical sites which have to meet several criteria of which the most important is too have access to a large enough pool of suitable registry participants, i.e. be a super-specialized regional uveitis service provider. More details are listed in the Clinical Site Feasibility Questionnaire available below.

Please contact us if you have any questions or are interested in participating.