The objective of our 2019 Clinical Trial Collaborative Meeting was to push treatments for rare, protein-spilling kidney diseases forward.
In an effort to find these new potential treatments, approximately 100 of the world’s top glomerular kidney disease researchers, doctors, US government officials, international representatives, patient advocates, and pharmaceutical companies met on June 26, 2019 in Washington, D.C.
To kick off the day, a panel of adult patients and patient parents sat in front of industry leaders and succinctly explained their frustrations with the lack of a standard of care, including more children in clinical trials, etc. (These excellent panelists ended their session with a standing ovation from the crowd, by the way)!!
We took a look at KidneyHealthGateway.com and other clinical trial education and awareness efforts of ours, and then separated our six work groups into breakout sessions where they discussed the impact and timeline of deliverables to come up with a realistic approach on how to implement these changes; ultimately help recruit for clinical trials.
In the afternoon, a panel of international experts informed the audience on how we can build global collaboration outside of the United States. Panelists traveled from as far as the United Kingdom, Italy, France, and Germany.
We concluded the day by devoting time for each of the 6 work groups to present their innovative ideas and encouraged conversation and questions amongst the room to make these deliverables even more focused and implementable.
A successful meeting on all accounts; June 26th left many attendees very optimistic and motivated to continue their efforts to increase participation in clinical trials while ultimately helping find new treatments for Nephrotic Syndrome, FSGS, IgAN, and other rare kidney diseases.
To keep the patient experience front and center during our Clinical Trial Collaborative Meeting, we wanted patients and their families from across the globe to have the ability to explain their frustrations and let drug makers, researchers, and the FDA know why steroids are simply no longer an option.
This video is the compilation of the anecdotes and messages our community responded with, which was played throughout the entire meeting.
A livestream of the entire day can also be found here.