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USA: INSPIRE Innovative Support for Patients with Covid-19 Registry (ME/CFS outcome measure)

Discussion in 'BioMedical ME/CFS News' started by Simon M, Nov 9, 2020.

  1. Simon M

    Simon M Senior Member (Voting Rights)

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    Post copied from
    Attitudes of incoming US politicians to ME/CFS and post-Covid 19 illness

    Details below.

    Basically, they aim to recruit a lot of people with a positive diagnosis for SARS-COV2 and follow them for 18 months, with ME/CFS as the primary outcome. (I think that's quite a strong connection with ME/CFS.)

    Innovative Support for Patients With SARS-COV2 Infections (COVID-19) Registry (INSPIRE)
    Innovative Support for Patients With SARS-COV2 Infections (COVID-19) Registry (INSPIRE)

    Lead Sponsor: Rush University Medical Center

    Collaborator: Yale University
    University of Washington
    Thomas Jefferson University
    University of California, Los Angeles
    University of California, San Francisco
    University of Texas Southwestern Medical Center
    The University of Texas Health Science Center, Houston

    Source Rush University Medical Center
    Brief Summary
    This study will use a digital platform to longitudinally track comprehensive information including patient self-report as well as data that describe the process and outcome of care in the electronic medical record (EMR) of a large representative sample of patients under investigation for SARSCOV2. The objective is to generate knowledge rapidly using digital tools and collaborative sciences to produce real-time data, analysis, and reporting compared to more traditional approaches. An additional goal is to promote an open science approach whereby scientists, with proper approvals and in line with the permissions granted by the participants, have the opportunity to work with data in ways that protects individual privacy but promotes rapid dissemination and implementation of knowledge.

    Overall Status Not yet recruiting
    Start Date November 14, 2020
    Completion Date November 14, 2022
    Primary Completion Date November 14, 2022
    Study Type Observational [Patient Registry]

    >> Primary Outcome

    Incident myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) 18 months post enrollment<<

    Secondary Outcome
    Measure Time Frame
    Ambulatory care and/or ED visits post enrollment 18 months post enrollment
    Hospitalizations post enrollment 18 months post enrollment
    Death during hospital admission 18 months post enrollment
    Hospital-free survival 18 months post enrollment
    ICU-free survival 18 months post enrollment
    Enrollment 4800

    Sampling Method: Non-Probability Sample


    INCLUSION CRITERIA 1. Fluent in English or Spanish; 2. Age 18 and over; 3. Self-reported symptoms suggestive of acute SARSCOV2 infection; 4. Under investigation for SARSCOV2 (defined as a patient who has received any screening or diagnostic test used to detect the presence of COVID19 including any FDA approved or authorized molecular or antigen-based assay) within the last 28 days. EXCLUSION CRITERIA 1. Unable to provide informed consent; 2. Study team unable to confirm result of diagnostic test for SARSCOV2; 3. Does not have access to a hand-held device or computer that would allow for digital participation in the study; 4. Individuals who are prisoners while participating in the study.
    Last edited by a moderator: Jan 20, 2021
    leokitten, oldtimer, FMMM1 and 12 others like this.
  2. Adrian

    Adrian Administrator Staff Member

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    I think studies like this could prove important in terms of looking at likelihoods of getting ME (or other complications) and then a good follow up. I assume they have a good random sample. Although a longer follow up than 18 months would be good. I wonder if different diseases have different potential trigger rates.
    oldtimer, MEMarge, cfsandmore and 7 others like this.
  3. alktipping

    alktipping Senior Member (Voting Rights)

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    18 month follow will not be long enough having read many reports of people who feel they are back to normal only to have major relapses two or even five years later . human beings have a natural tendency to overlook their own health issues i successfully deluded my self for a decade regarding cognitive issues around memory and facial recognition . so from that point of view a minimum of five years follow up would be more likely to retrieve the right results .
    oldtimer, cfsandmore and Snow Leopard like this.
  4. cfsandmore

    cfsandmore Established Member (Voting Rights)

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    I wonder what they will do after 18 months if their findings are interesting. Will it just go in the wastebasket with all the other interesting findings?
    oldtimer, alktipping and MEMarge like this.
  5. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Last edited by a moderator: Jan 20, 2021

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