Abstract
BackgroundThe German Lipoprotein Apheresis Registry (DLAR) has been initiated by members of the Nephrology Foundation (WiNe), the German association of kidney centres (DN), the German society of nephrology (DGfN) and additional medical associations taking part in the apheresis working group. Its goal is the introduction of a substantial database, suitable to provide statistical evidence for the assessment of extracorporeal procedures. Data have been added to the DLAR since October 2011. In this article, preliminary results are first reported.Methods and resultsData are stored on a secured Internet platform. The recorded information comprises mean values and rates of change in lipid levels (cholesterol, triglyceride, low-density lipoprotein cholesterol (LDL-C), high-density lipoprotein cholesterol, lipoprotein(a) (Lp(a)) before and after apheresis therapy, blood/plasma volume, frequency and type of adverse effects, medication, vascular events, diagnoses and comorbidity. It is collected by participating apheresis centres from all over Germany. Up until October 2014, a total of 7946 lipoprotein apheresis (LA) treatments of 991 patients (787 with documented LDL-C and 688 with documented Lp(a) levels) via 96 medical accounts were documented and analysed. The current share of Lp(a) patients is 50.6 % (Lp(a) ≥ 60 mg/dl; n = 348/688). For both LDL-C and Lp(a), lowering rates exceeding 60 % have been observed. Likely in conjunction with these reduction rates, the preliminary analysis shows a 90 % decline in major adverse coronary events (MACE) as well as a decrease in major adverse non-coronary events (MANCE) by 69 %. As before, good tolerability and low rates of adverse effects (< 3 %) of LA therapy were found.ConclusionsThe available numbers suggest in parts very good response by the participating centres to the DLAR. Unfortunately, there are also centres that have not documented any patients so far or LA treatments at all. The benchmark values for reduction rates in lipoprotein concentration required by the directives of the German Federal Joint Committee (G-BA) have all been met. The decrease in MACE and MANCE rates currently observed is very promising. However, the comparably short runtime of the registry does not allow for high confidence in the current results. Certainly, reliable data will be extractable in the coming years. Given the high interest expressed by European neighbours, the extension of the registry to the European level should be a future goal for the DLAR as well.
Highlights
The German Lipoprotein Apheresis Registry (DLAR) has been initiated by members of the Nephrology Foundation (WiNe), the German association of kidney centres (DN), the German society of nephrology (DGfN) and additional medical associations taking part in the apheresis working group
Given the high interest expressed by European neighbours, the extension of the registry to the European level should be a future goal for the Deutschen LipoproteinaphereseRegisters (DLAR) as well
All lipoprotein apheresis (LA) techniques approved in Germany meet the quality standards required by the German Federal Joint Committee (G-BA) in that they achieve a minimum 60 % reduction of lowdensity lipoprotein cholesterol (LDL-C) and Lp(a) concentrations in a single treatment [2]
Summary
The DLAR is a secure Internet platform providing participating centres with an input mask for data on treatments observing all data law requirements. The scientific advisory board of the DLAR has requested at least one complete LA treatment to be recorded every 3 months. The foundation owned Wissenschaftliches Institut für Nephrologie (WiNe—Scientific Institute for Nephrology, Düsseldorf, Germany) was commissioned as operator of the DLAR. The Stiftung für Nephrologie (Nephrology Foundation) is as funding body of the DLAR responsible for financing, incorporating project-bound donations of the industrial partners involved The company BioArtProducts GmbH (B.A.P., Rostock, Germany) was commissioned with the technical implementation of the registry as well as the preliminary statistical data analysis. In assessing data quality and analysis, WiNe is supported by a scientific advisory board, the members of which are listed in the acknowledgements of this publication
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