This video was not produced by NetworkPharma.tv but has been included within the library because it is directly relevant to individuals who work in medcomms and is here with permission from its owner.

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For this edition of their webinar series “Keeping it real”, Dr Mark Larkin, CEO and Founder of Vitaccess; Dr Catherine Bottomley, Director of Patient-Centered Outcomes; and Dr Casey Quinn, Chief Research Officer, presented a free webinar on the topic of “Co-creating rare disease registries”. In this webinar, we explained the lifecycle of creating collaborative digital patient registries and taking them through to the publications stage. We looked at the MyRealWorld MG study, which measures the impact of myasthenia gravis on patients’ daily lives, as a case study. This digital study is sponsored by argenx, and was co-created with patient advocacy groups and key opinion leaders from 9 countries. The panel focused on how co-creation in the early stages of the study design, leading up to publication from evidence generation, helps give insight into the patient’s reality of living with MG.

Recorded as a live webinar, 15 November 2021, by Vitaccess and is included here with their permission.

Mark’s LinkedIn page is at https://www.linkedin.com/in/marklarkin-vitaccess/

Catherine’s LinkedIn page is at https://www.linkedin.com/in/catherine-bottomley-1063a43a/

Casey’s LinkedIn page is at https://www.linkedin.com/in/caseyhquinn/

You can find out more about Vitaccess at https://vitaccess.com

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We are building a library of free webcasts and other video content for the global MedComms Community and others at http://www.networkpharma.tv and we’d welcome your suggestions for new content.