The registry has established the clinical course of JORRP in a large sample representative of the United States. Young age was the most important determinant of disease severity (frequency of surgery, extent of disease at diagnosis, and progression of disease). Addressing questions of pathogenesis and disease course will require a revised data collection instrument and molecular analysis of tissues.

Younger children were found to have persistent disease and often underwent an increased number of surgical procedures in the first year after diagnosis of JORRP. Sex and race were not important factors in determining remission.