Understanding the New Screening Guidelines for Kidney Health and Wilms Tumor in WAGR Spectrum
Managing healthcare for individuals with WAGR spectrum can be confusing and complicated. Now for the first time ever, there are evidence-based guidelines that provide specific recommendations for screening and diagnosis. The IWSA has simplified the Kidney Health and Wilms tumor recommendations to help parents to better understand the guidelines. When parents are well informed, they are better prepared to be full and confident partners in the medical team.
The newly published guidelines are the result of a collaboration between the IWSA and Children's Hospital of Philadelphia (CHOP). This collaboration was made possible by IWSA families who are participating in the WAGR Syndrome Patient Registry. The CHOP team is currently designing additional studies and more information will be shared soon.
The full article, titled "Results from the WAGR syndrome Patient Registry: Characterization of WAGR Spectrum and Recommendations for Care Management" is available here
Screening information for Kidney Health and Wilms tumor is available here
International WAGR Syndrome Association
PO Box 2875
Montgomery Village, MD 20886