ME/CFS Registry and Biobank

Project description

In Germany, there are currently two special outpatient clinics for patients with ME/CFS, one for adult patients at the Charité Fatigue Centrum in Berlin, headed by Prof. Scheibenbogen, and one for children, adolescents and young adults up to 25 years of age at the ME/CFS focus of the Children's Polyclinic of the MRI TUM in Munich, headed by Prof. Behrends. A joint data collection of these ME/CFS centers has not been established.

The ME/CFS registry and biobank (MECFS-R) study is intended to initially pool medical data from specialized routine care on a bicenter basis and, after recruitment of additional German centers, on a multicenter, longitudinal, and web-based basis, as extensive as possible, and to make this data available for research.

Following the example of already well-established European registry studies (e.g., the ESID registry of the European Society for Immunodeficiencies), digital data acquisition should take place in a tiered approach according to cost-benefit analysis. Medical institutions can decide, based on capacity, whether a clearly defined core data set (level 1) or more complex data sets (level 2 or 3) should be digitally captured. The digital implementation is to be carried out in collaboration with the Munich-based IT company Bitcare, whose database concepts have proven successful in the context of the Transplantation Cohort (Tx Cohort) of the German Center for Infection Research (DZIF) or the COVID-19 study of the MRI TUM (COMRI) and with whom the team at the MRI TUM has been working successfully for many years.

The aim of the MECFS-R is to accurately describe the clinical picture and its course in Germany clinically and epidemiologically as well as to derive epidemiological or medical risk factors, if applicable, and to define subcohorts for future treatment approaches.

(Description adapted from clinical trial website: see link above)