An Update re: Patient Engagement Collaborative
Post# of 148283
An Update re: Patient Engagement Collaborative (PEC)
Miranda Erlanson- in the 'Leronlimab For Long Haulers Information & Support' FB Group- indicated that she is interested in applying for/ participating in the Patient Engagement Collaborative (PEC).
Miranda participated in the leron LH trial- and is passionately, actively working on behalf of the health of long-haulers. (She is featured in several news stories and the video: FDA HAVE COMPASSION.)
Her comments when I asked her if it was OK to share her interest in this project with you all here at IHangout:
"As founder of the nonprofit Covid Survivors from Texas and a clinical trial participant connected to all the social media support groups across the United States, I would be a great participant. I am also a part of the Long Covid Alliance."
She is an incredible advocate for patients and has invaluable insights into the clinical trial process. I am thrilled she is interested.
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(The PEC is a collaboration between the Clinical Trials Transformation Initiative (CTTI) in conjunction with FDA. CTTI is a public-private partnership made up of about 80 groups to 'develop and drive adoption of practices that will increase the quality and efficiency of clinical trials.' They have already come up with a number of great recommendations - and FDA appears to be listening--!
From the FDA and CTTI websites, there are 3 patient reps from across the country for a 3-year commitment to the PEC.)
Clinical Trials Transformation Initiative