Informed Consent: A Monthly Review
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February 2021

This digest aggregates and distills key content addressing informed consent from a broad spectrum of peer-reviewed journals and grey literature, and from various practice domains and organization types including international agencies, INGOs, governments, academic and research institutions, consortiums and collaborations, foundations, and commercial organizations. We acknowledge that this scope yields an indicative and not an exhaustive digest product.

Informed Consent: A Monthly Review is a service of the Center for Informed Consent Integrity, a program of the GE2P2 Global Foundation. The Foundation is solely responsible for its content. Comments and suggestions should be directed to:

Editor
Paige Fitzsimmons, MA
Associate Director, Center for Informed Consent Integrity
GE2P2 Global Foundation
paige.fitzsimmons@ge2p2global.org
PDF Version: GE2P2 Global_Informed Consent – A Monthly Review_February 2021

Editor’s Note:
The latest webinar in the Center’s continuing series was held on January 20^th 2021 and included a presentation from Pat Furlong and Ryan Fischer, both of Parent Project Muscular Dystrophy, titled PPMD Gene Therapy Preference Study: Eliciting patient and caregiver preference for emerging gene therapies. The presentation focused on their work on the quantification of patient and caregiver preferences in gene therapy studies to help inform research and researchers and how this impacts the understanding of informed consent in rare disease, specifically Duchenne Muscular Dystrophy. The presentation was followed by a discussion with call participants. Full information and the webinar recording can be found here on the Center for Informed Consent Integrity website.