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Pediatric research study in Miami

Discussion in 'Active Clinical Studies' started by inimresearch, Apr 16, 2014.

  1. inimresearch

    inimresearch

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    Hello everyone. I'm a research intern at the Institute of neuro immune medicine (INIM). I have the wonderful oportunity to work with Dr. Rey and Dr. Klimas, they're both wonderful physicians. We're currently looking for 10 to 17 year olds with a diagnosis of Chronic Fatigue Syndrome (CFS) for a Pediatric Study being conducted by the Centers for Disease Control (CDC) for which we are a participating site.

    If you know anyone that could benefit from this please let us know call us to 305-275-5470
    Thank you.

    The institute has a website. Please visit us at www.nova.edu/nim
     
    Last edited: Apr 16, 2014
    Valentijn likes this.
  2. inimresearch

    inimresearch

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    My apologies if I posted in the wrong section

    Note: thread has been moved
     
    Last edited by a moderator: Apr 16, 2014
  3. A.B.

    A.B. Senior Member

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    What kind of study? Could you provide some more information please?
     
  4. inimresearch

    inimresearch

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    We want to learn more about children and adolescents with chronic fatigue syndrome
    (CFS). People with CFS have severe, long-lasting fatigue and may also have many other symptoms that their doctors cannot explain. No studies have compared illness characteristics of CFS in young people in different clinics. This information will also help doctors understand how this illness affects their patients and better help them managing their illness.

    This is a section of the informed consent that explains a little what we'd be doing.
     
  5. Valentijn

    Valentijn Activity Level: 3

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    @inimresearch - I know the clinic has a good reputation, but this sounds like a chronic fatigue study, rather than an ME/CFS study. If CCC or ICC aren't being used, why not? And what definition will be used?
     
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  6. SOC

    SOC Senior Member

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    I saw the flier about this when I was there and talked briefly with Dr K about several research projects. This looked legit to me. I would have enrolled my own child if she was still an adolescent.

    It looks like an effort to characterize (in legit patients) the illness as manifested in pediatric patients.

    Because it is a CDC study with standard "accepted" questionnaires (which we all love for their clarity, accuracy, and applicability :rolleyes:), there will be obnoxious questions. I appreciate that INIM has clarified that study participants don't have to answer offensive questions.

    We need as many clear ME patients in this study as possible. I think that patients are only being selected from the practices of legit ME/CFS docs, but I'm not certain.

    @inimresearch, would you ask if the child must be a patient of INIM or other specific doctors, or if any child with a CFS diagnosis can participate?
     
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  7. NK17

    NK17 Senior Member

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    @inimresearch I think it's comforting to learn directly from a researcher that a few selected ME/Cfs clinic's are part of a multi-sites CDC sponsored study of childrens/adolescents affected by the disease.

    I'd like to know, as many other patients I'm sure would like to know, which Consensus Criteria will be used for patient's selection for this specific study and if a part of the questionnaire is regarding Cognitive Functioning.

    Thank you ;)
     
  8. inimresearch

    inimresearch

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    @SOC CDC questionnaires are very thorough, as a matter of fact Dr. Klimas liked the Physical Examination form the CDC provided so much that we implemented it to our regular visits. Any child diagnosed with CFS is able to participate

    @NK17 Thank you, I enjoy my work and I Participants will be evaluated for their possible inclusion and verbal assent/parental permission will be obtained over the phone during eligibility screening. Any participant (10 – 17 years of age) managed as or diagnosed with CFS, PIF, or ME in the participating clinic sites is eligible. Exclusions are HIV infection, current pregnancy, or dementia precluding full participation/consent.
     
  9. SOC

    SOC Senior Member

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    So not any child diagnosed with CFS is allowed to participate. They must be being treated at, or at least diagnosed by one of the participating clinics, right? That makes a big difference to patients because we want to be confident that the patient cohort is properly diagnosed. There are far, far too many people incorrectly diagnosed with CFS by GPs. Poor diagnosis and inclusion of non-ME/CFS patients in research studies has been a huge problem in the past, causing ambiguous and even faulty research results. We like it when research studies require proper diagnosis by expert clinicians. :)
     
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  10. NK17

    NK17 Senior Member

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    Can I ask which are the other participating clinics?
    Is the OMI in Mountain View (CA) funded by Dr. Kogelnik part of the clinics?
     
  11. Kati

    Kati Patient in training

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    It sounds to me like this is the existing CDC study branching out to include and research children.

    They want to see if there are differences in diagnosis between the centers, and it is inclusive of the patients they see, whether they belong to a case definition or not.
     
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