The RUBRIC (acronym for "Rational Use of Biologics in rare Refractory Immune mediated inflammatory diseases (IMIDs) Consortium") registry collects information on the safety and effectivity of off-label treatment with biologicals in patients with rare, therapy-refractory IMID's in the Netherlands.
Severe, therapy-refractory, immune-mediated inflamatory diseases ('IMID's') are increasingly treated with new targeted therapies, like biologicals. These types of medication are frequently prescribed off-label based on underlying pathofysiological mechanisms or case reports, because official guidelines for these rare disease are lacking. In the Netherlands, biologicals are not being paid by insurance companies unless there is adequate evidence, preferably from randomised controlled trials ('RCT's'). However, due to the rarity of these diseases, it is not rational to request RCT's as evidence in these severe IMID's. Often, these new powerful treatments are the only possibility to treat the disease activity. It is of uttermost importance to monitor effectivity and safety of these treatments.
What kind of research is this?
To facilitate this, the RUBRIC registry has been developed. RUBRIC is the acronym for “Rational Use of Biologics in rare Refractory Immune-mediated inflammatory diseases (IMIDs) Consortium". RUBRIC is an online registry with the primary goal to collect information concerning the precise amount of patients with rare, therapy-refractory IMID's that off-label are being treated with biologicals in the Netherlands. By including these group IMID patients in a registry in which universal objective and subjective outcome variables are being collected, more information will be gathered to evaluate the effectivity and safety of the treatment. Eventually, the RUBRIC registry will lead to more evidence-based medicine. Which patients can be included in the RUBRIC registry? RUBRIC is developed for all patients with rare, therapy-refractory IMID's that off-label are being treated with biologicals in the Netherlands. For more information, please click on the button below. U will be transferred to the website of the RUBRIC registry. The website is in Dutch only.