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Open US: The CHROME (CHRonic Fatigue SyndrOME) study

Discussion in 'Recruitment into current ME/CFS research studies' started by Andy, Jun 6, 2021.

  1. Andy

    Andy Committee Member (& Outreach when energy allows)

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    Screenshot 2021-06-06 at 06.45.14.png

    "Study participants will complete a kit + questionnaire to establish their CFS activity. A small fraction of participants will be asked to complete a second kit + questionnaire 1-2 weeks following the first sample collection. Participants may give permission to review their medical records, serving as another data source, but will not be required to do so. Providing medical record access helps researchers make connections between each participant’s blood and urine samples and their medical history.

    Researchers will use self-reported information and medical records to understand the collected samples better by making connections between each participant’s blood and urine chemistry and their medical history."

    https://thechromestudy.com/how-this-study-works/


    "You qualify for the CHROME Study if you:
    • Have been diagnosed with Chronic Fatigue Syndrome by a healthcare professional
    • Are able to use our DxCollect® Fingerstick and urine sample collection kit to send a sample
    • Have access to a computer, tablet, or smartphone to be able to take health surveys"
    https://thechromestudy.com/do-you-qualify/
     
  2. MEMarge

    MEMarge Senior Member (Voting Rights)

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    Do you know who is running this study @Andy?
     
  3. Ariel

    Ariel Senior Member (Voting Rights)

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    "DxTerity is sponsoring the CHROME study. DxTerity is a Los Angeles-based research company that uses state of the art technologies to analyze DNA and RNA. They also developed the DxCollect® Kit (used in CHROME) for easy at-home collection of fingerstick blood samples. DxTerity will be analyzing the samples and information collected during CHROME to better understand the signs and symptoms of CFS, improving diagnostics and treatment options."

    Hm.
     
  4. Andy

    Andy Committee Member (& Outreach when energy allows)

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    Ariel has quoted the information given, the rest of the FAQ, such as it is, can be seen here, https://thechromestudy.com/faq/

    Unless I missed it, they aren't specifying any particular definition of ME, so my assumption is that they are relying on that clinicians diagnosis of CFS to give them the right patients. If that's right then as evidence goes this won't be totally useless, but pretty close.
     
  5. cfsandmore

    cfsandmore Established Member (Voting Rights)

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    After giving them my email address, this is what I received.

     
    Michelle, Ariel, TigerLilea and 5 others like this.
  6. Ariel

    Ariel Senior Member (Voting Rights)

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    Is there any point in emailing them to ask what case definition/criteria they are using?
     
    Wyva, Snow Leopard and Trish like this.
  7. Trish

    Trish Moderator Staff Member

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    MEMarge, Michelle and Peter Trewhitt like this.
  8. cfsandmore

    cfsandmore Established Member (Voting Rights)

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    I've been left with the impression that the NIH and some of our own charities have a hard time finding people with ME/CFS to participate in their studies. I was blindsided by the overwhelming response they are receiving. I think the ease of this study is appealing to pwME.


     
    Dolphin, MEMarge and Peter Trewhitt like this.
  9. cfsandmore

    cfsandmore Established Member (Voting Rights)

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    I was sent a link to download an app to my phone. After creating an account, I ordered a test kit.

    The kit contains an odd single-use lancet, (thankfully they sent two as one failed), and a tube for urine. There's a collection cup and suction bulb for getting the urine into its tube. There's a block that goes in the freezer for keeping the urine frozen during shipping.

    I collected my urine this morning before breakfast. The urine needs to be in the freezer for 2 hours before being shipped. After eating and resting a bit, I collected my blood sample. They need to be shipped on the day of collection.

    The urine is shipped using FedEx. The blood is shipped using USPS.

    I hope this makes sense because I'm foggy.
     
  10. dave30th

    dave30th Senior Member (Voting Rights)

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    What are they looking for exactly? do they say?
     
  11. Forbin

    Forbin Senior Member (Voting Rights)

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    Somewhere there's a researcher, perhaps in Bristol, kicking themselves for not coming up with this study name first.

    :)
     
  12. cfsandmore

    cfsandmore Established Member (Voting Rights)

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    They give no details.
     
    Peter Trewhitt likes this.

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