patient registry

I need to write something to support the development of an ME/CFS patient registry in my country. I'm interested to know what ME/CFS patient registries exist in the world - I think there's; Solve M.E.'s ones - Australia and the US OMF - US (and beyond?) Germany - I think there's one? And I...

from email

Project Summary Background: While patients are increasingly engaged in clinical research and clinical registries in an advisory capacity, collaboration and patient leadership in clinical effectiveness research remains limited. Newer patient-led participatory outcomes research for Long COVID-19...

The Facilitation of Clinical and Therapeutic Discoveries in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome and Related Diseases: A Protocol for the You + ME Registry Research Platform. Abstract ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome) is a chronic, complex...

Le Sueur, H., Bruce, I. N., Geifman, N., & MASTERPLANS Consortium (2020). The challenges in data integration - heterogeneity and complexity in clinical trials and patient registries of Systemic Lupus Erythematosus. BMC medical research methodology, 20(1), 164...

" Mason Foundation ME CFS Biobank Survey The Mason Foundation is a charitable trust that supports medical and scientific research on myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS). The Mason Foundation has engaged the Nous Group (Nous) to investigate the viability of establishing...

Preview of the project. http://solvecfs.org/wp-content/uploads/2018/01/Chronicle_National_Patient_Registry.pdf ETA: Title, and minor formatting corrections.