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Open Sweden 2022: The REDBANK Study - Amelieklinikin (was RED Clinic) Jonas Axelsson (now recruiting)

Discussion in 'Recruitment into current ME/CFS research studies' started by mango, Sep 26, 2020.

  1. mango

    mango Senior Member (Voting Rights)

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    MD Jonas Axelsson, RED Clinic in Stockholm, Sweden
    in collaboration with researchers at Karolinska Institutet and Lund University in Sweden, and Stony Brook University in the US.

    The purpose of the REDBANK Study is to collect information on any long-term symptom grouping that appears following an infection, but that differs in character from what is usually associated with infection or its complications. By broadly collecting information and biological samples, they hope to see patterns that can be used for both diagnosis and treatments.

    https://redclinic.se/redbank.html
     
    Hutan, Kitty, Invisible Woman and 8 others like this.
  2. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Is this for Swedes only, or can people living in other countries participate?
     
    Hutan, Kitty, Invisible Woman and 2 others like this.
  3. mango

    mango Senior Member (Voting Rights)

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    I don't know. I couldn't find any info about that in the documents attached to/linked from the study information page.
     
    Kitty, Invisible Woman, Andy and 2 others like this.
  4. Kalliope

    Kalliope Senior Member (Voting Rights)

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    I'll send them an email and ask :)
     
    Kitty, Invisible Woman, Andy and 3 others like this.
  5. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Red Clinic replied today and said the study is for people living in Sweden only, due to it involving collecting specimens.
     
    Hutan, Kitty, Invisible Woman and 5 others like this.
  6. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Red Clinic was discussed today in the thread Possibility of ME or PVFS after COVID-19, Long Covid
    The clinic made an appearance in a Swedish documentary about Long Covid because ME and Long Covid have similar symptoms and Red Clinic was enrolling patients for a research project on finding "remaining virus" in Covid-19 patients. The work has been put on a temporary hold, to secure ethical approval of the project.

    I had a look at their webpage today and it seems they don't have any active research projects at time being.

    Their webpage has both a Swedish version and an English version. If I remember correctly, only the Swedish version had a closer presentation of their approach to ME and theories of what ME is. Now this is available in English as well for those who'd like to read.

    Although many diseases may be considered to involve metabolism and the nervous system, we use the term "neurometabolic disease" to refer to one of a few specific groupings of symptoms and biochemical abnormalities. Other names used to refer to similar groupings - or to subgroups of them - include myalgic encephalopathy/chrnoic fatigue syndrome (ME/CFS), postural orthostatic tachycardia syndrome (POTS), dysautonomic disease, small fiber neuropathy, fibromyalgia, Ehler's-Danlos' syndrome (EDS), chronic Lyme disease, chronic borreliosis, soldier's heart, and many more. Not everyone with these diagnoses have neurometabolic disease, but currently so few of them have been tested for it that it is hard to estimate how many that do.

    More at
    https://redclinic.se/eng/red.html
     
    cfsandmore, rvallee, Kitty and 4 others like this.
  7. mango

    mango Senior Member (Voting Rights)

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    https://redclinic.se/redbank.html
     
  8. mango

    mango Senior Member (Voting Rights)

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    RED Clinic has changed names, and is now Ameliekliniken.

    https://www.ameliekliniken.se/

    It looks like they have removed all info about this study from their website.
     
    Last edited: Mar 17, 2021
    Hutan, cfsandmore and Andy like this.
  9. mango

    mango Senior Member (Voting Rights)

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    This study is currently active again.
     
    Lilas, Andy and Hutan like this.
  10. mango

    mango Senior Member (Voting Rights)

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    Recovered ME-patient Björn Eklund recently mentioned Axelsson's research in a blog post:

    https://bjorneklund.se/utan-jonas-axelsson-hade-jag-inte-kunnat-gora-den-har-vandringen/
     
    Lilas, Andy, Wyva and 1 other person like this.
  11. mango

    mango Senior Member (Voting Rights)

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    A news article from 2020

    Klinik forskade om långtidscovid utan tillstånd
    https://www.svt.se/nyheter/vetenskap/klinik-forskade-om-langtidscovid-utan-tillstand
     
    Andy and Hutan like this.
  12. mango

    mango Senior Member (Voting Rights)

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    Research project title: Vävnadsbankning och karakterisering av biologiskt material ifrån patienter med retroviralt associerade sjukdomar (RED)

    In English, something like "Tissue banking and characterization of biological material from patients with retrovirally associated diseases (RED)"

    Some more auto-translated info from the ethical approval application:
     
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  13. mango

    mango Senior Member (Voting Rights)

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    cfsandmore, Kalliope, Andy and 2 others like this.
  14. mango

    mango Senior Member (Voting Rights)

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    An update on this. The Swedish Ethical Review Authority has not received any new applications from Ameliekliniken or Jonas Axelsson.
     
    Kalliope, Hutan and Andy like this.
  15. mango

    mango Senior Member (Voting Rights)

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    Kalliope, Hutan and Andy like this.

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