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- Title
The German Multicenter Registry for ME/CFS (MECFS-R).
- Authors
Hieber, Hannah; Pricoco, Rafael; Gerrer, Katrin; Heindrich, Cornelia; Wiehler, Katharina; Mihatsch, Lorenz L.; Haegele, Matthias; Schindler, Daniela; Donath, Quirin; Christa, Catharina; Grabbe, Annika; Kircher, Alissa; Leone, Ariane; Mueller, Yvonne; Zietemann, Hannah; Freitag, Helma; Sotzny, Franziska; Warlitz, Cordula; Stojanov, Silvia; Hattesohl, Daniel B. R.
- Abstract
Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating multisystemic disease characterized by a complex, incompletely understood etiology. Methods: To facilitate future clinical and translational research, a multicenter German ME/CFS registry (MECFS-R) was established to collect comprehensive, longitudinal, clinical, epidemiological, and laboratory data from adults, adolescents, and children in a web-based multilayer-secured database. Results: Here, we present the research protocol and first results of a pilot cohort of 174 ME/CFS patients diagnosed at two specialized tertiary fatigue centers, including 130 (74.7%) adults (mean age 38.4; SD 12.6) and 43 (25.3%) pediatric patients (mean age 15.5; SD 4.2). A viral trigger was identified in 160/174 (92.0%) cases, with SARS-CoV-2 in almost half of them. Patients exhibited severe functional and social impairment, as reflected by a median Bell Score of 30.0 (IQR 30.0 to 40.0) and a poor health-related quality of life assessed with the Short Form-36 health survey, resulting in a mean score of 40.4 (SD 20.6) for physical function and 59.1 (SD 18.8) for mental health. Conclusions: The MECFS-R provides important clinical information on ME/CFS to research and healthcare institutions. Paired with a multicenter biobank, it facilitates research on pathogenesis, diagnostic markers, and treatment options. Trial registration: ClinicalTrials.gov NCT05778006.
- Subjects
CHRONIC fatigue syndrome; QUALITY of life; CHILD patients; MEDICAL research; ADULTS
- Publication
Journal of Clinical Medicine, 2024, Vol 13, Issue 11, p3168
- ISSN
2077-0383
- Publication type
Article
- DOI
10.3390/jcm13113168