Missed our webinar about co-creating rare disease registries?

Watch it here!


On Monday 15th November, Vitaccess hosted the 3rd webinar in the “Keeping it real” series.

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.

This 35-minute webinar includes a 20-minute panel and Q&A session.

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