JIR-CliPS

ABSTRACT

Juvenile Inflammatory Rheumatism (JIR) is a family of rare and mostly lifelong diseases. Many affected patients will need long-term medication, develop significant morbidity and have an increased risk of dying at young age. Although evidence or consensus-based recommendations for diagnosis and treatment exist, they are difficult to implement in a real-life setting due to the variety of medical systems and financial capabilities. Additionally, physicians in many countries lack sufficient training in recognizing and treating these rare diseases in childhood.

The Action will collect diagnostic procedures, treatment plans and outcome measures applied in patients with 5 selected JIR-conditions herewith providing a picture of the current care provided internationally. Next, the Action members will develop consensus clinical practice strategies that are universally applicable and will guarantee the children with JIR to be offered the optimal treatment available in their country. Detailed clinical outcome data of these patients will be recorded in registries provided by the network. These outcomes will then be used to improve the treatment plans and initiate innovative research studies via ‘plan-do-check-act’ cycles as a continuous process.

The results of the Action will be disseminated at the end of every cycle inside and outside of the network. We will develop an international network of medical specialists and organize the training for the physician taking care of these patients. We also aim to force strategic decisions, regarding clinical care and licensing of specific immunosuppressive medication, from health authorities. This will improve the outcome of children with Juvenile Inflammatory Rheumatism worldwide.