The German Multicenter Registry for ME/CFS (MECFS-R)

Hieber, Pricoco, Gerrer, Heindrich, Wiehler, Mihatsch, Haegele, Schindler, Donath, Christa, Grabbe, Kircher, Leone,Mueller, Zietemann, Freitag, Sotzny, Warlitz, Stojanov, Hattesohl

Abstract

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.

The multicentric MECFS-R, a patient registry with an attached biobank, was developed by a multidisciplinary team of clinicians, researchers, patients, and members of ME/CFS foundations and support groups. It was established at the Munich Chronic Fatigue Center for Young People (MCFC) in Munich and the Charité Fatigue Center (CFC) in Berlin. Additional centers are currently being integrated to create a comprehensive national registry.

Inclusion criteria of the MECFS-R require the diagnosis of ME/CFS by PEM-based clinical criteria (CCC, IOM, CDW-R, PCD-J) and written informed consent provided by the patients or their legal guardians.

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.

Source: Journal of Clinical medicine, open access

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