Rare Daily Staff

The Eugene Washington PCORI Engagement Awards program, an initiative of the Patient Centered Outcomes Research Institute has awarded the International WAGR Syndrome Association $50,000 in funding to support its Conference on Wilms Tumor in WAGR Syndrome.

The project will bring researchers and parents together to collaborate on the development and prioritization of future projects by enabling parents of individuals with WAGR Syndrome to be engaged in planning research on Wilms tumor, developing a patient-centered model for research, developing patient reported outcomes applicable to future research. It will also produce online educational video resources about diagnosis and treatment of Wilms tumor in WAGR syndrome for parents, primary care providers, specialists, and researchers.

The “Conference on Wilms Tumor in WAGR Syndrome” will take place in Ann Arbor, Michigan in the fall of 2018, and will follow PCORI’s mission to improve healthcare delivery and outcomes by producing and disseminating high-integrity, evidence-based information from research guided by parents/caregivers and the broader healthcare community.

“Children with WAGR syndrome have a 50 percent risk for developing Wilms tumor, a type of cancer of the kidney. WAGR syndrome is a very rare disorder and presents unique and serious challenges in diagnosis and treatment of this tumor,” said Kelly Trout, director of research and medical advocacy for the International WAGR Syndrome Association. “By bringing parents and researchers together, we can explore these challenges, and develop a roadmap for research that will result in more accurate diagnosis, expand treatment options, and improve long-term health for children with WAGR syndrome.”

The conference is part of a portfolio of projects approved for funding by the PCORI Engagement Award Program to help develop a community of patients and other healthcare stakeholders who have the knowledge, skills and partnerships to participate in and advance patient-centered outcomes research and patient-centered comparative effectiveness research.

February 15, 2018
Photo: Kelly Trout, director of reserach and medicl advocacy for the Intenartional WAGR Syndrome Association

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