Patient Research Partners: Elevating Research Through Patient Perspectives

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Inside GRAPPA

GRAPPA Network

20 episodes

3 weeks ago

Welcome to Inside GRAPPA, a podcast and brought to you by the Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA). Our mission is to enhance understanding and treatment of psoriasis and psoriatic arthritis through the sharing of research, knowledge, and collaborative efforts.

We bring together leading rheumatologists, dermatologists, scientists, patient representatives, and industry partners, uniting our passions to make a difference for those living with these conditions.

Join our host Fabian Proft as we navigate the challenges, share the latest research, and explore the triumphs in the world of psoriasis and psoriatic arthritis. Together, we can make a difference.

Hosted on Acast. See acast.com/privacy for more information.

All content for Inside GRAPPA is the property of GRAPPA Network and is served directly from their servers with no modification, redirects, or rehosting. The podcast is not affiliated with or endorsed by Podjoint in any way.

Join our host Fabian Proft as we navigate the challenges, share the latest research, and explore the triumphs in the world of psoriasis and psoriatic arthritis. Together, we can make a difference.

Hosted on Acast. See acast.com/privacy for more information.

Medicine

Health & Fitness,

Science

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Patient Research Partners: Elevating Research Through Patient Perspectives

Inside GRAPPA

13 minutes 13 seconds

4 months ago

Patient Research Partners: Elevating Research Through Patient Perspectives

In this special episode of Inside GRAPPA, we delve into the growing impact of the Patient Research Partner (PRP) Network—an essential part of GRAPPA’s mission to integrate the patient voice into scientific research on psoriatic disease.

Host Fabian Proft is joined by two influential PRPs: Maarten DeWitt from the Netherlands and Suzanne Grieb* from the United States. Together, they explore the critical role of PRPs, the evolution of the network since its inception in 2013, and how these dedicated patient collaborators are shaping treatment guidelines, influencing steering committees, and helping recruit the next generation of partners.

What does it really mean to live the principle of “Nothing about us without us”? What kinds of challenges—and transformative insights—do patients bring to the research table? And what can researchers learn from patient partners about improving outcomes, communication, and the research agenda itself?

Listen in as we discuss:

The origins and global growth of the PRP network
Real-world experiences from PRPs living with psoriatic arthritis
How patients are steering research priorities, not just participating in them
Strategies for recruiting and onboarding new patient partners
Where the network is headed—and how you might get involved

🎧 Tune in for a powerful conversation that highlights how experiential knowledge and scientific expertise can—and must—work hand in hand.

Subscribe to Inside GRAPPA on your favorite podcast platform.

Stay tuned. Stay curious.

*Suzanne Grieb is engaged in GRAPPA-related activities as a private consultant or advisor and not in their capacity as a Johns Hopkins faculty member.

Hosted on Acast. See acast.com/privacy for more information.