The MLC-R aims to create a large-scale registry that provides data on epidemiology,phenotypes, and disease trajectories of and health care for Long COVID at any age inGermany, which can be used for future clinical trials.
Infections with the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) have
been observed in Germany since January 2020 and can result in acute coronavirus disease
2019 (COVID-19) as well as in long-term sequela, referred to as Long COVID. The umbrella
term Long COVID comprises ongoing new SARS-CoV-2-associated symptoms later than four
weeks from the onset of acute COVID-19. The term Post-COVID-Condition (PCC) was
introduced by the WHO and stands for ongoing or new SARS-CoV-2-associated symptoms, which
persisted for at least two months. These symptoms often include fatigue, brain fog,
dyspnea, orthostatic intolerance, as well as exercise intolerance, with a worsening of
symptoms after mild daily activities (post-exertional malaise, PEM). PCC can severely
impair daily function, social participation, and health-related quality of life. The
prevalence was estimated as up to 15% in infected people with pre-Omicron variants and
lower with Omicron variants. Risk factors include female gender and pre-existing
morbidity, with low risk in young children. The most severe form of PCC in people with
initially mild or moderate COVID-19 is myalgic encephalomyelitis/chronic fatigue syndrome
(ME/CFS). The prevalence of ME/CFS was shown to increase in the context of the pandemic.
While progress has been made in deciphering the pathogenesis of acute COVID-19, the
mechanisms of Long COVID/PCC are poorly understood. Increasing evidence indicates that
remaining viral particles, as well as inflammation, altered microcirculation, dysfunction
of the autonomic nervous system, and/or autoimmunity, may contribute.
With the web-based German MLC-R, we aim at deep phenotyping of PCC, identification of
subtypes and risk factors, describing trajectories of the disease and patient journeys,
and providing clinical data for future clinical trials. Patients are also invited to
contribute biosamples for future translational research.
Inclusion Criteria:
I. Written informed consent of the patient or legal guardian.
II. Confirmed SARS-CoV-2 vaccination and/or confirmed or probable SARS-CoV-2 infection:
Positive SARS-CoV-2 polymerase chain reaction (PCR) or rapid antigen test (AST),
documented probable COVID-19 (e.g., typical CT scan), probable COVID-19 with a history of
high-risk contact, anti-SARS-CoV-2-N antibodies (and/or in non-vaccinated people -S-IgG
antibodies) following probable COVID-19.
III. Additional ICD-10 codes: U09.9!V: Suspected post-COVID-19 condition, unspecified;
U12.9!V: suspected adverse reactions to COVID-19 vaccine use, unspecified (post-COVIDvac
condition).
Exclusion Criteria:
- Any subsequent medical data that question the diagnosis of PCC or post-COVIDvac
condition
- Clinical picture can be explained by another underlying disease.
- Pregnancy
MRI Chronic Fatigue Center for Young People (MCFC) Children's Hospital, Technical University of Munich & Munich Municipal Hospital
Munich, Bavaria, Germany
Investigator: Uta Behrends, Prof. Dr. med.
Contact: +89 3068 2632
register.mcfc@mri.tum.de
Uta Behrends, Prof. Dr. med.
+4989 3068 2632
uta.behrends@tum.de
Daniela Schindler, Dr.
+4989 4140 6995
daniela.schindler@tum.de
Uta Behrends, Prof. Dr. med., Principal Investigator
MRI Chronic Fatigue Center for Young People (MCFC), Children's Hospital, Technical University of Munich & Munich Municipal Hospital