registry

  1. Nightsong

    What can wage development before and after a G93.3 diagnosis tell us about prognoses for myalgic encephalomyelitis?, 2024, Kielland et al

    Abstract: Prognoses for persons affected by myalgic encephalomyelitis (ME) are rarely studied systematically. Existing studies are often based on smaller samples with unclear inclusion and subjective outcome criteria, and few look at wages as indicators of illness trajectories. This article...
  2. SNT Gatchaman

    Preprint The German Multicenter Registry for ME/CFS MECFS-R, 2024, Hieber, Scheibenbogen, Behrends et al.

    The German Multicenter Registry for ME/CFS MECFS-R Hannah Hieber; Rafael Pricoco; Katrin Gerrer; Cornelia Heindrich; Katharina Wiehler; Lorenz L Mihatsch; Matthias Haegele; Daniela Schindler; Quirin Donath; Catharina Christa; Annika Grabbe; Alissa Kircher; Ariane Leone; Yvonne Mueller; Hannah...
  3. Hutan

    Patient registries

    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...
  4. Samuel

    Rare disease registry

    i don't really understand this article but it seems potentially relevant [given e.g. the seeming heterogeneity of m.e., diagnostic questions, and the many things that pop up here that don't seem quite the same as known diseases but also are not part of m.e. definitions]...
  5. Andy

    Solve ME/CFS Initiative's ME/ CFS Patient Registry: You + M.E.

    Preview of the project. http://solvecfs.org/wp-content/uploads/2018/01/Chronicle_National_Patient_Registry.pdf ETA: Title, and minor formatting corrections.
    • Andy
    • Thread
    • 2020 biobank me/cfs patient registry registry solve mecfs initiative video webinar
    • Replies: 54
    • Forum: News from organisations
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