Real world evidence

Publications + Media

From community voice reports to peer-reviewed journals, the insights we glean from community conversations are making real-world impact.

Apr 2024 | World Orphan Drug Congress | Boston, Massachusetts  | April 23-25, 2024 
Adaptation of Goal Attainment Scaling for Prader Willi Syndrome (PWS): Development of a goal inventory for standardized implementation

Apr 2024 | World Orphan Drug Congress | Boston, Massachusetts | April 23-25, 2024 
The Symptoms, Challenges, and Issues of Prader Willi Syndrome The Development of a Conceptual Model 

Apr 2024 | TREND Report
TREND Community 2023 Impact Report

Apr 2024 | The 5th International Symposium on IgG4-Related Disease | Milan, Italy | April 3, 2024
Understanding the Needs of the IgG4-Related Disease Community by Taking a Patient-Centric Approach

Feb 2024 | World Symposium | San Diego, CA | February 4-9, 2024
Cognitive and Mental Health Challenges in Fabry Disease: A Real-World-Evidence Study Using Social Media

Jan 2024 | TREND Report
Chromosome 8P Community Voice Report

Dec 2023 | Rheumatology and Therapy
Social Listening in Gout: Impact of Proactive vs. Reactive Management on Self-Reported Emotional States

Dec 2023 | Written by Geoff Case, digital editor, RARE Revolution Magazine
What is a flare in Sjögren’s? TREND Community’s innovative use of artificial intelligence to find answers for the community

Nov 2023 | American College of Rheumatology | San Diego, California | November 10-15, 2023 
Understanding Community Perspectives on Disease Management: A Social Media Analysis of Gout Care Strategies

Nov 2023 | AANEM | American Association Of Neuromuscular & Electrodiagnostic Medicine | Phoenix, AZ | November 1-4, 2023
Using Real-World Evidence to Understand the Diagnostic Journey of People Living With Myasthenia Gravis and Its Impact on Mental Health