Patient Registries and Biobanks
- You+ME Registry and Biobank: https://youandme.solvecfs.org/
Solve M.E.’s patient registry. Collects patient-reported data and biospecimens. International participation.
- AusME Registry: Australian ME/CFS and Long COVID registry, partnership between Emerge Australia and Solve M.E.
| Registry / Biobank | Description |
|---|---|
| UK ME/CFS Biobank | London School of Hygiene & Tropical Medicine. Funded partly by ME Association. |
- Netherlands ME/CFS Cohort and Biobank (NMCB): National Dutch infrastructure for ME/CFS research.
- DecodeME: UK-based genetic study with 15,000+ participants. Largest ME/CFS study ever conducted.
- German ME/CFS Register and Biobank (Munich): https://projects.mecfs-research.org/de/projects/registry-and-biobank
Standardized bicentric register and biobank of medical data and biosamples from patients diagnosed with ME/CFS (IOM and Canadian Consensus Criteria), coordinated by the Münchner Chronische Fatigue Centrum (MCFC; lead: Prof. Uta Behrends) at the TUM Klinikum rechts der Isar, in cooperation with the Charité Fatigue Centrum Berlin. Established 2022–2024 with Bundesministerium für Gesundheit (BMG) funding; the ME/CFS Research Foundation covered 2025 storage costs, with continuation financed through cooperating research projects and public funding. Operator page and contact: https://mcfc.mri.tum.de/en/mecfs-registry. Access is by collaboration, not self-service: research groups apply to the MCFC with a project proposal (samples/data are made available to cooperating projects in Germany and internationally); patients enrol through the centres (MCFC for children/adolescents in Bavaria; Charité Berlin for adults), or find their regional centre via https://www.pednet-lc.de.