Empowering the GM1 and GM2 community with a co-created education resource about a natural history study

This poster was presented at the 19th Annual World Symposium, 2023 by Gisela Linthorst, Head of Patient Engagement and Advocacy at Azafaros and Dan Lewi, co-founder of the Cure & Action for Tay-Sachs (CATS) Foundation.  The poster presents the education resource co-created by Azafaros and Cognitant Group Limited for the GM1 and GM2 patient community about the PRONTO study.

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Abstract

Recruiting participants for a rare disease natural history study can be challenging due to the small patient population to recruit from. Motivation to participate is often further reduced by the lack of effective information materials shared with patients and their families about the implications of participation.

Azafaros launched the PRONTO natural history study for GM1 and GM2 gangliosidoses in 2022 and took an innovative approach to overcome the challenges of educating the patient population about the study. Working with Cognitant, specialists in creating educational resources for patients and caregivers, they utilized a co-creation process to ensure a user-centred design to create patient-led digital education resources about their upcoming study.

By convening key stakeholders, including KOLs, clinicians, advocacy groups, patients, and caregivers, from Europe and the US, Azafaros created a unique multi-lingual digital knowledge centre that utilises different digital media to detail what a natural history study is, what participation in PRONTO will entail and how the study will be assessed. As the brain processes visual information 60,000 times faster than text, presenting information in video format promotes accessibility. By hosting this content in a digital knowledge centre, clinicians, advocacy groups and families can send this content directly to participants and caregivers, enabling them to view and share the digital content away from the clinic, and in their own time.

The impact of this digital intervention on the GM1 and GM2 communities is assessed through patient feedback and engagement metrics. In the first 3 months over 250 individual users from 13 different countries have accessed the knowledge centre. Along with an average engagement time of 07 minutes and 30 seconds, it clearly shows that the importance of curating and sharing effective and understandable information with the patient communities.