In this episode of Consumer Health Partnerships, we speak with Emma Weatherley, Managing Director of FSHD Global Research Foundation, and Kalvin Hopper, an advocate and world-ranked wheelchair tennis player, about the beginning and impact of the CURE FSHD registry, a groundbreaking patient-led initiative designed to support clinical trials for Facioscapulohumeral Muscular Dystrophy.

They delve into the challenges faced by people living with FSHD, the innovative approaches adopted to overcome these hurdles, and the strategic partnerships that have been formed to make the registry a reality. Emma and Kalvin explore the project's patient-centric approach, highlighting the significance of lived experiences in shaping effective healthcare solutions. They also touched on the journey of developing a comprehensive clinical trial passport programme and the anticipated positive outcomes for the FSHD community.

Key Takeaways:

The CURE FSHD registry is a world-first initiative designed to empower those with FSHD to become clinical trial ready.
The registry facilitates a ‘clinical trial passport’ approach, making it easier for patients to participate in upcoming trials.
Patient involvement from the outset ensures the registry meets the real needs of people with FSHD, enhancing user experience.
Emma emphasises the importance of lived experience in healthcare design and decision-making for genuine engagement.
The initiative is set to bring more clinical trials to Australia, offering new hope and treatment possibilities for the FSHD community.

Links & Resources:

Kalvin Hopper: https://www.linkedin.com/in/kalvinhopper/?originalSubdomain=au
Dudeability, Kalvin’s YouTube channel: https://www.youtube.com/@dudeability
Emma Weatherley: https://www.linkedin.com/in/emma-weatherley-29530a58/
YouTube video: Cure FSHD Clinical Trial Passport Program: https://www.youtube.com/watch?v=ty-6KQGm14Q
Muscular Dystrophy Australia: https://www.linkedin.com/company/muscular-dystrophy-australia/
Muscular Dystrophy NSW: https://www.linkedin.com/company/muscular-dystrophy-nsw/
Muscular Dystrophy Queensland: https://www.linkedin.com/company/mdq/
Neuromuscular WA: https://www.linkedin.com/company/neuromuscular-wa/
Genetic Alliance Australia: https://www.linkedin.com/company/genetic-alliance-australia/
Rare Voices Australia: https://www.linkedin.com/company/rare-voices-australia/
Springbok Analytics: https://www.linkedin.com/company/springbok-analytics/posts/?feedView=all
Medicines Australia: https://www.linkedin.com/company/medicines-australia/posts/?feedView=all
WeGuide: https://www.linkedin.com/company/weguidehealth/

"Consumer Health Partnerships” is a podcast for healthcare stakeholders that spotlights the synergistic power of partnering with consumers to share a human-centred health system. We share inspiring stories and practical strategies from healthcare professionals at the forefront of embracing a human-centred approach to patient experience and a patient-centred approach to patient experience and co-design. We are redefining care by respecting their patients’ equal place in conversations about their health.

This show is a proud member of the Talking HealthTech Podcast Network - the premier audio destination for cutting-edge insights and thought leadership in healthcare delivery, innovation, digital health, healthcare ICT, and commercialisation. Learn more at www.talkinghealthtech.com/podcast/network.

From Patient Stories to Clinical Solutions: A Journey in FSHD Patient Empowerment

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