The COVID-19 Registry in Rhineland-Palatinate in the context of international registry activities documenting COVID-19 outcomes

Herz 2020 · 45:316–318 https://doi.org/10.1007/s00059-020-04928-w Published online: 24 April 2020 © Springer Medizin Verlag GmbH, ein Teil von Springer Nature 2020 Anselm K. Gitt · Alexandra Bernhardt · Ralf Zahn · Uwe Zeymer · Armin Grau · Manfred E. Beutel · Karl Werdan Medizinische Klinik B, Klinikum der Stadt Ludwigshafen/Rhein, Ludwigshafen, Germany 2 Stiftung Institut für Herzinfarktforschung, Klinikumder Stadt Ludwigshafen/Rhein, Ludwigshafen, Germany 3 Institut für Herzinfarktforschung GmbH, Ludwigshafen, Germany Neurologische Klinik, Klinikum der Stadt Ludwigshafen/Rhein, Ludwigshafen, Germany 5 Klinik und Poliklinik für Psychosomatische Medizin und Psychotherapie, UniversitätsklinikMain, Mainz, Germany Universitätsklinik und Poliklinik für Innere Medizin III, UniversitätsklinikumHalle (Saale) der MartinLuther-Universität Halle-Wittenberg,Halle (Saale), Germany


Rationale of COVID-19 registries
The global spread of Coronavirus SARS-CoV-2 (SARS-CoV-2) was declared a pandemic by the World Health Organization (WHO) on March 11, 2020 and is currently posing major challenges for health care systems around the world . Besides the planning of intensive care resources, the lack of evidence-based therapy options is a particular problem for the treating physicians. General statements on the typical course of SARS-CoV-2 infection cannot be made reliably at present. Disease patterns are unspecific, diverse, and vary widely, from asymptomatic courses to severe complications, such as pneumonia with lung failure, cardiovascular and cerebral manifestations, and ultimately death. Symptoms include fever, cough, and shortness of breath as well as neurological and cardiac manifestations [1]. Risk groups are mainly older people (with a steadily increasing risk of severe courses from above 50-60 years of age), smokers, and patients with certain preexisting conditions (e.g., cardiovascular diseases, lung diseases, diabetes mellitus, cancer, and weakened immune system [2,3]). Therefore, standardized and coordinated data collection on a large scale is of pivotal importance to learn about the natural course of the disease, to accelerate knowledge on the role of preexisting comorbidities in the COVID-19 pandemic, and to identify factors associated with outcomes.

Planned and already enrolling COVID-19 registry activities in Germany and Europe
There are a plethora of planned and ongoing activities documenting the COVID-19 disease patterns using chart reviews or collecting prospective data. In Germany, many professional medical societies are currently planning or setting up registries for COVID-19 patients with different focuses on disease patterns and specific pre-existing conditions in their scientific fields, e.g., in patients with rheumatic diseases (DGRh-Deutsche Gesellschaft für Rheumatologie e. V.) or in patients with renal diseases (DGf N-Deutsche Gesellschaft für Nephrologie). In addition, large private hospital groups such as HELIOS announced data collection and analysis of COVID-19 patients in their hospitals. Most of these activities are in a planning stage and little information is available in the public domain to date.
Currently, three large-scale prospective data collections are already ongoing: the international LEOSS registry (Lean European Open Survey on SARS-CoV-2 Infected Patients), the CAPACITY-COVID registry (registry of patients with COVID-19 including cardiovascular risk and complications), and the German COVID-19-RLP-Registry. Both LEOSS and CAPACITY-COVID have received support by national and international professional organizations; the CAPACITY-COVID registry was started inThe Netherlandsand recentlyendorsed by the European Society of Cardiology (ESC) for international enrolment. Study designs, objectives, and planned outcome analyses are summarized in . Table 1.
The expert committees of COVID-19-RLP, LEOSS, and CAPACITY-COVID have exchanged their codebooks to ensure consistency and comparability of data collection. Data collection of the ongoing activities is an extension of Infection Consortium) and the WHO for data collection in the COVID-19 pandemic, ensuring comparability of data but focusing on specific aspects of the disease. Due to the prospective design of COVID-19-RLP and CAPACITY-COVID with patients' informed consent both registries have planned short-and mid-term follow-ups of the enrolled patients (. Table 1).

Perspective
Despite the current additional significant workload of clinically active physicians involved in the care of patients of the COVID-19 pandemic, different groups have put a lot of effort into the initiation of a number of prospective planned registry studies to better understand the natural course of this new infectious disease. Scientific collaborations are already planned and should be continued to ensure data consistency and comparability. We look forward to obtaining additional data on the short-and mid-term course of the disease with prospective follow-ups of hospital survivors in the COVID-19-RLP as well as in the CA-PACITY-COVID registries with specific focus on cardiovascular and neurological outcomes. COVID-19-RLP in addition will also collect data on the yet-unknown consequences for mental health and the psychosocial outcomes of survivors of COVID-19.