Objectives: To enhance clinical and multicentre research outcomes in systemic lupus erythematosus (SLE), standardised documentation of patient- and disease-related features is important. The aim of this European Alliance of Associations for Rheumatology (EULAR) taskforce was to define a core set of essential items for the comprehensive care of SLE patients in clinical practice, with an extension for vital elements required for translational and observational research.
Methods: A multidisciplinary EULAR task force group engaged in a multistep approach including a 4-round Delphi survey and a face-to-face meeting.
Background: Data of patients with inflammatory rheumatic diseases are annually recorded within the National Database of the German Collaborative Rheumatology Centers.
Methods: For rheumatoid arthritis (RA), psoriatic arthritis (PsA), axial spondylarthritis (axSpA), systemic lupus erythematosus (SLE), systemic sclerosis (SSc), Sjögren's syndrome (SjS), idiopathic inflammatory myositis (IIM), polymyalgia rheumatica (PMR), giant cell arteritis (GCA), ANCA-associated vasculitis (AAV), Behçet's disease (BD), adult onset Still's disease (AOSD) and autoinflammatory diseases (AID) data are reported from 2023. Information includes physician-reported disease activity on a numeric rating scale (NRS) of 0-10, treatment and patient-reported outcomes.
Background: Cochlear implants are implanted hearing devices; instead of amplifying sounds like common hearing aids, this technology delivers preprocessed sound information directly to the hearing (ie, auditory) nerves. After surgery and the first cochlear implant activation, patients must practice interpreting the new auditory sensations, especially for language comprehension. This rehabilitation process is accompanied by hearing therapy through face-to-face training with a therapist, self-directed training, and computer-based auditory training.
View Article and Find Full Text PDFDigital health applications (DHAs) are revolutionising patient care by improving access to evidence-based therapy and promoting active self-management. The continuously growing number of DHAs enables patients to act more independently through digital support. The budget-neutral prescription and cost coverage by statutory health insurance companies reduce financial barriers for practitioners and patients.
View Article and Find Full Text PDFPharmacoepidemiol Drug Saf
August 2024
In pharmacoepidemiology, robust data are needed to judge the impact of drug treatment on pregnancy, pregnancy outcomes and breast-fed infants. As pregnant and breastfeeding women are usually excluded from randomised clinical trials, observational studies are required. One of those data sources are pregnancy registers specifically developed to focus on certain diseases or disease groups.
View Article and Find Full Text PDFIn the National database (NDB) of the German regional collaborative arthritis centres, annual data on the rheumatological care of patients with inflammatory rheumatic diseases have been collected since 1993. This first annual report presents current cross-sectional data on medication and patient-reported outcomes gathered in 2022.
View Article and Find Full Text PDFFront Med (Lausanne)
March 2024
Objectives: To investigate, whether inflammatory rheumatic diseases (IRD) inpatients are at higher risk to develop a severe course of SARS-CoV-2 infections compared to the general population, data from the German COVID-19 registry for IRD patients and data from the Lean European Survey on SARS-CoV-2 (LEOSS) infected patients covering inpatients from the general population with SARS-CoV-2 infections were compared.
Methods: 4310 (LEOSS registry) and 1139 cases (IRD registry) were collected in general. Data were matched for age and gender.
Background And Objective: Within the context of an interdisciplinary research project, we created a cutting-edge prototype of an adaptive digital auditory training system designed for cochlear implant (CI) users. By leveraging the evidence-centered design (ECD) framework, we integrated a dynamic difficulty adjustment feature that tailors the experience to the unique performance capabilities of each individual user.
Methods: The ECD provides a conceptual design framework suitable for complex assessments of competence and dynamic performance.
The aim of this study is to present the current care situation of patients with giant cell arteritis (GCA), Takayasu arteritis (TAK), ANCA-associated vasculitis (AAV) and Behçet's disease (BD). Trends over the last 15 years will reflect improvements and remaining deficits in the management of vasculitides. Consecutive cross-sectional data from patients with vasculitides from the German National Database (NDB) of the Collaborative Arthritis Centres between 2007 and 2021 were included.
View Article and Find Full Text PDFHand Osteoarthritis (HOA) is a frequently occurring musculoskeletal disease that impacts health. Diagnostic criteria often incorporate osteophytes documented through imaging procedures. Radiographic imaging is considered the gold standard; however, more sensitive and safer methods like ultrasound imaging are becoming increasingly important.
View Article and Find Full Text PDFBackground: Biobanks are essential structures for scientific research. The RHINEVIT biobank is used to recruit biomaterials from rheumatology patients in outpatient care and to conduct clinical research studies (e.g.
View Article and Find Full Text PDFThe national database (NDB) of the German regional collaborative rheumatology centers was switched to the RheMIT documentation software last year. Rheumatology centers that already use RheMIT for care contracts or other research projects can therefore use the software to also participate in the NDB. Experiences from a hospital, a medical care center and a specialist practice show how the changeover to RheMIT from an existing documentation system or a new participation in the NDB with RheMIT can be implemented.
View Article and Find Full Text PDFObjective: To assess whether a healthy lifestyle is associated to beneficial effects on various systemic lupus erythematosus (SLE) health domains.
Methods: In a cross-sectional study, Mediterranean Diet Adherence Score (MEDAS), physical activity energy expenditure (PAEE), and smoking status were assessed by questionnaires, along with clinical parameters and various health domains including Systemic Lupus Disease Activity Score (SLEDAI), Depression Scale (CES-D), Fatigue Severity (FSS), functional status (FFbH), physical and mental quality of life (PCS, MCS). Lifestyle choices were assessed with respect to health domains by linear regression modeling.
Objective: To analyse the clinical profile of SARS-CoV-2 breakthrough infections in at least double-vaccinated patients with inflammatory rheumatic diseases (IRDs).
Methods: Data from the physician-reported German COVID-19-IRD registry collected between February 2021 and July 2022 were analysed. SARS-CoV-2 cases were stratified according to patients' vaccination status as being not vaccinated, double-vaccinated or triple-vaccinated prior to SARS-CoV-2 infection and descriptively compared.
Electronic health records (EHRs) contain enormous amounts of real-world data that could inform researchers, doctors and patients about many aspects of rheumatology. However, EHRs are not yet fully utilized, mainly because automatic data extraction is difficult. Several studies in 2022 highlight the feasibility and clinical utility of computer-assisted EHR analysis.
View Article and Find Full Text PDFFront Med (Lausanne)
November 2022
Background: The COVID-19 pandemic led to transformations in healthcare infrastructures and increased use of (innovative) telemedicine (TM) tools. Comparison of the use of video consultation (VC) in rheumatology in the pre-pandemic period and during the pandemic might allow for evaluating this new form of consultancy in healthcare due to changing conditions and possibilities.
Materials And Methods: Cross-sectional nationwide online survey among German rheumatologists and rheumatologists in training between March and May 2021 promoted by newsletters and Twitter posts.
Front Med (Lausanne)
October 2022
Background: Based on given legislation the German approach to digital health applications (DiGA) allows reimbursed prescription of approved therapeutic software products since October 2020. For the first time, we evaluated DiGA-related acceptance, usage, and level of knowledge among members of the German Society for Rheumatology (DGRh) 1 year after its legal implementation.
Materials And Methods: An anonymous cross-sectional online survey, initially designed by the health innovation hub (think tank and sparring partner of the German Federal Ministry of Health) and the German Pain Society was adapted to the field of rheumatology.
Inn Med (Heidelb)
December 2022
Since 2020, digital health applications (DiGA) can be prescribed at the expense of the German statutory health insurance (SHI) system after undergoing an approval procedure by the Federal Institute for Drugs and Medical Devices (BfArM). DiGA can be approved provisionally for 1 year (with the option of extension) or permanently. The latter is dependent on scientific evidence of a positive effect on care, which can be a medical benefit or a patient-relevant structural and procedural improvement in care.
View Article and Find Full Text PDFInn Med (Heidelb)
June 2022
Vascular acrosyndromes are characterized by sparse, uniform clinical manifestations and a variety of possible pathomechanisms. The present article focuses on the functional entities. Raynaud phenomenon is based on cold- or stress-induced vasospasms of acral arteries.
View Article and Find Full Text PDFACR Open Rheumatol
October 2022
Objective: Some patients with rheumatic diseases might be at higher risk for coronavirus disease 2019 (COVID-19) acute respiratory distress syndrome (ARDS). We aimed to develop a prediction model for COVID-19 ARDS in this population and to create a simple risk score calculator for use in clinical settings.
Methods: Data were derived from the COVID-19 Global Rheumatology Alliance Registry from March 24, 2020, to May 12, 2021.
Aim Of The Study: The digital transformation in healthcare is also of fundamental importance for healthcare research. For this reason, experts should agree on, prioritize and identify key topics for a medium-term strategy of the German Network for Health Services Research and classify the general development of digital health in the context of health services research.
Methods: Between April and September 2018, the working groups "Digital Health" and "Validation and Linkage of Secondary Data" of the German Network for Health Services Research were asked to submit their expertise online using the methodological approach of a Delphi study.
Introduction: Recently, many sectors have seen disruptive changes due to the rapid progress in information and communication technology (ICT). The aim of this systematic literature review was to develop a first understanding of what is known about new ICTs in rheumatology and their disruptive potential.
Methods: PubMed, LIVIVO, and EBSCO Discovery Service (EDS) databases were searched for relevant literature.