What question did this study set out to answer?

The study aims to assess the current diagnostic and therapeutic landscape for cardiac sarcoidosis in Germany.

February 8, 2026European Heart Journal0 citations

German cardiac sarcoidosis registry - design and first results

LULaura Ueberham JSJ Seidemann KLKonrad Latuscynski

Key Points

The study aims to assess the current diagnostic and therapeutic landscape for cardiac sarcoidosis in Germany.
Established a prospective registry involving 9 centers in Germany.
Included patients meeting JCS guidelines for definite or probable cardiac sarcoidosis.
Conducted thorough evaluations including ECG, Holter-ECG, TTE, and 18FDG-PET imaging.
Collected data on symptoms, biopsy results, and therapeutic interventions.
Planned 5-year follow-up to track adverse outcomes and therapy changes.
Included 92 patients, with an average age of 57.9 years; 65.2% were males.
Only 17.4% of patients with endomyocardial biopsy showed non-caseating granulomas.
High prevalence of arrhythmias noted; 10 had pacemakers and 37 defibrillators at diagnosis.
During follow-up, 31.5% experienced ventricular tachycardia or fibrillation, necessitating ablation in 17.4%.
80 patients received immunosuppressive therapy.

Abstract

Abstract Background Cardiac sarcoidosis (CS) is challenging to diagnose but can result in harmful outcomes. Most of the current data on CS come from retrospective observations with outdated management. Because CS is rare, larger, prospective and well-defined cohorts are needed. Purpose We present the first prospective multicenter German CS registry with the purpose of evaluating the current status of diagnosis, therapy and outcomes of CS. Methods We established a prospective registry using RedCap and 9 German centers agreed to participate. Patients with definite or probable CS according to the JCS guidelines were included. All patients underwent a comprehensive workup, uniform treatment and follow-up (FU). Data on symptoms, ECG and Holter-ECG, TTE, CMR, 18FDG-PET, laboratory values, extracardiac involvement, biopsy results, catheter ablation, device interrogations etc. were collected. FU information on adverse outcomes and therapeutic changes were obtained at every planned follow-up visit or unscheduled and emergency visits with a planned FU of 5 years. Results Currently, 92 patients from 3 active centers (Figure 1, 6 centers are in the initiation process) have been included. Mean age was 57.9 ± 10.6 years and 65.2% were males. Although EMB was performed in 62 patients (67%), evidence of non-caseating granulomas was identified in only 16 (17.4%). Diagnosis was confirmed by a transbronchial biopsy in 13 patients (14.1%). High-degree AV block, VT/VF and sudden cardiac death (SCD) were frequent initial presentations (Table 1). The high prevalence of arrhythmia explains why 10 patients already had a pacemaker (PM) and 37 patients a defibrillator (ICD) at the time of diagnosis. During a mean FU of 939 ± 837.7 days, an additional 9 patients received an ICD and two received a PM. 80 patients (87%) received immunosuppressive therapy (Table 1). During FU, VT/VF occurred in 29 patients (31.5%) and VT ablation was necessary in 16 patients (17.4%). Conclusion We have established a prospective, multicenter German CS registry with the purpose of providing a comprehensive and reliable foundation for future studies of CS. The initial analysis of the data is consistent with previous observations, showing a high prevalence of arrhythmias, a low diagnostic yield of EMB and delayed diagnosis.Table 1:Patient characteristics Figure 1:Participating centers

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