EAC 2021 - 13 - WAGR spectrum characterisation and recommendations for care management - Kelly Trout

Kelly Trout explains how WAGR syndrome has been defined as a disorder with four primary features: Wilms tumor, Aniridia, Genitourinary abnormalities, and a Range of developmental delays. Data from 91 participants in the WAGR Syndrome Patient Registry shows that many patients are also affected by obesity, high blood pressure, kidney failure, and heart and lung problems, and that there is wide variety in how individual patients are affected by these conditions. We propose the term "WAGR Spectrum" to more accurately describe this disorder, and suggest a comprehensive care management model for diagnosis and treatment.
See the Q&A session for follow-up discussion on this topic:
• EAC 2021 - 15 - Sessio...
Kelly Trout, BSN, RN is the Director of Research and Medical Advocacy for the International WAGR Syndrome Association, and is Program Manager of the WAGR Syndrome Patient Registry. She has served as a Merit Reviewer for PCORI, the Patient-Centered Outcomes Research Institute, was Principal Investigator for the 2018 PCORI Conference on Wilms tumor in WAGR syndrome, and is currently serving as a PCORI Ambassador. Kelly is a member of the Global Genes RARE Foundation Alliance Leadership Council. She is the author of numerous articles on WAGR syndrome, and has presented at national and international conferences on WAGR syndrome and related disorders as well as on issues related to rare disease patient advocacy. Kelly lives with her family in San Antonio, Texas. Her daughter Caroline has WAGR syndrome.
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This recording is from the 5th European Aniridia Conference, an international networking event organised by Aniridia Network in association with Aniridia Europe, that was held online from 31st July to 1st August 2021.
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The event received funding from the European Union’s Horizon 2020 research and innovation programme under the EJP RD COFUND-EJP N° 825575.
For more information and support about aniridia visit:
Aniridia Network - aniridia.org.uk
Aniridia Europe - www.aniridia.eu
Video editing and subtitles by Everywhere+
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Music License Code: 0AMYEWSMUT0AIM0Y