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Patient-Led Research Collaborative

@patientled

Patient-led research and advocacy for #LongCovid and infection-associated chronic conditions!

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Joined November 2020
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We’ve released a new paper on designing & optimizing clinical trials for #LongCOVID! Strong, high-impact trials are critical & most current ones are insufficient. The paper gives guidance on treatments, outcomes, design, participant inclusion, & more. sciencedirect.com/science/ar… 1/
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Patient-Led Research Collaborative retweeted
Patient-Led Research Collaborative (@patientled) profile picture
Patient-Led Research Collaborative@patientledOct 28
New PLRC-funded study from @UCSF looking at post-hoc analysis of mAb trial for #LongCovid shows how well-designed trials move the field forward, even when they have negative results. Study: nature.com/articles/s41467-0… 1/
Screenshot of paper headline and summary in Nature Communications that reads: SARS-CoV-2-specific monoclonal antibody AER002 in long COVID: an exploratory randomized phase 2a mechanistic trial

ALT Screenshot of paper headline and summary in Nature Communications that reads: SARS-CoV-2-specific monoclonal antibody AER002 in long COVID: an exploratory randomized phase 2a mechanistic trial

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Patient-Led Research Collaborative retweeted
Long COVID Labs (@longcovidlabs) profile picture
Long COVID Labs
@longcovidlabsOct 28
Important insights in this 🧵👇
Patient-Led Research Collaborative (@patientled) profile picturePatient-Led Research Collaborative@patientledOct 28
New PLRC-funded study from @UCSF looking at post-hoc analysis of mAb trial for #LongCovid shows how well-designed trials move the field forward, even when they have negative results. Study: nature.com/articles/s41467-0… 1/
Screenshot of paper headline and summary in Nature Communications that reads: SARS-CoV-2-specific monoclonal antibody AER002 in long COVID: an exploratory randomized phase 2a mechanistic trial

ALT Screenshot of paper headline and summary in Nature Communications that reads: SARS-CoV-2-specific monoclonal antibody AER002 in long COVID: an exploratory randomized phase 2a mechanistic trial

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New PLRC-funded study from @UCSF looking at post-hoc analysis of mAb trial for #LongCovid shows how well-designed trials move the field forward, even when they have negative results. Study: nature.com/articles/s41467-0… 1/
Screenshot of paper headline and summary in Nature Communications that reads: SARS-CoV-2-specific monoclonal antibody AER002 in long COVID: an exploratory randomized phase 2a mechanistic trial

ALT Screenshot of paper headline and summary in Nature Communications that reads: SARS-CoV-2-specific monoclonal antibody AER002 in long COVID: an exploratory randomized phase 2a mechanistic trial

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"29 participants met criteria for PEM prior to the infusion; of those who had baseline PEM, 76% (22/29) reported the presence of PEM in the two days following infusion and 24% (7/29) reported no PEM in the same timeframe." 16/
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The team also tracked reinfections throughout the trial to inform analysis and results. Read full study here: nature.com/articles/s41467-0… 17/
SARS-CoV-2-specific monoclonal antibody AER002 in Long COVID: an exploratory randomized phase 2a...

SARS-CoV-2-specific monoclonal antibody AER002 in Long COVID: an exploratory randomized phase 2a...

Nature Communications - In this exploratory randomized trial, the monoclonal antibody AER002 was safe but did not improve clinical or biomarker outcomes in Long COVID. Post-hoc findings suggest...

nature.com
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Patient-Led Research Collaborative retweeted
COVID-19 Longhauler Advocacy Project (@C19LH_Advocacy) profile picture
COVID-19 Longhauler Advocacy Project
@C19LH_AdvocacyOct 26
We met with Shionogi to Answer Your Questions about access to #Xocova (Ensitrelvir), a PEP (post-exposure prophylaxis) used to try to prevent a #COVID-19 infection after an exposure. Several studies are also underway evaluating its potential to prevent and treat #LongCOVID. Here is what we learned:
Infographic by the COVID-19 Longhauler Advocacy Project (C19LAP) titled “We Met with Shionogi to Answer Your Questions About Access to XOCOVA.” What is XOCOVA? An antiviral used for COVID-19 post-exposure prophylaxis (PEP), unlike Paxlovid, which treats infection. The graphic reports a 67% reduction in severe COVID-19 and 34% reduction in transmission. The RESILIENCE and UCSF studies investigate Long COVID prevention and treatment. Accessing XOCOVA: No positive test or proof of another person's infection is required; close contact with someone with COVID-19 is sufficient. Available for ages 12 and older, subject to clinician and insurer requirements. Pharmacies can order it through distributors. Insurance coverage varies, with commercial copay assistance and patient assistance programs available. Barriers: Limited testing, delays within the 72-hour treatment window, clinician bias, drug interactions, and affordability. More information: www.xocova.com or 877-4XOCOVA.

ALT Infographic by the COVID-19 Longhauler Advocacy Project (C19LAP) titled “We Met with Shionogi to Answer Your Questions About Access to XOCOVA.” What is XOCOVA? An antiviral used for COVID-19 post-exposure prophylaxis (PEP), unlike Paxlovid, which treats infection. The graphic reports a 67% reduction in severe COVID-19 and 34% reduction in transmission. The RESILIENCE and UCSF studies investigate Long COVID prevention and treatment. Accessing XOCOVA: No positive test or proof of another person's infection is required; close contact with someone with COVID-19 is sufficient. Available for ages 12 and older, subject to clinician and insurer requirements. Pharmacies can order it through distributors. Insurance coverage varies, with commercial copay assistance and patient assistance programs available. Barriers: Limited testing, delays within the 72-hour treatment window, clinician bias, drug interactions, and affordability. More information: www.xocova.com or 877-4XOCOVA.

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