The German Lipid Apheresis Registry – remaining to be established

Abstract

Background The target-oriented distribution of increasingly limited health care resources demand data, which support the benefit of established treatment procedures such as lipid apheresis. In recent years, the Federal Joint Committee (G-BA), a paramount decision-making body of the German Health Care System, warrants reassessment of the approval of chronic lipid apheresis therapy for regular reimbursement. Therefore, in 2005, an interdisciplinary German apheresis working group has been established by members of both German Societies of Nephrology. The goal of this working group has been to revise 1.) the indication for lipid apheresis according to current guidelines and recommendations for the treatment of lipid disorders and 2.) to transfer recent advances of our understanding of the impact of lipoproteins for atherogenesis and thrombosis into these recommendations. In addition, the working group developed standardized report forms, which could be implemented in a software solution to establish a German Lipid Apheresis Registry. Methods and Results From 2005 to 2009 the working group met on a regular basis to substantiate the first defined goals. The indication for lipid apheresis was critically revised with respect to cardiovascular guidelines and actual scientific evidence and was accepted by the members of the apheresis working group. The first draft of report forms for the German Lipid Apheresis Registry was validated. Various software solutions were discussed, but proved not feasible because of the lack of financial sponsoring. Conclusions There is consensus between the medical societies and health care authorities that there is a need for a German Lipid Apheresis Registry. The advantage of such a registry is to substantiate prospective long-term data on clinical outcome of chronic lipid apheresis treatment and to support additional clinical research activities in that field. In addition, this registry should comply with requests of the Federal Joint Committee (G-BA). The necessary terms for this registry are well defined, but financial support is an issue.