Patients and their families should be informed of the presumed high risk of developing cancer of 10-15%.
During basic diagnostics, the risk of congenital tumors should always be borne in mind. With regard to anomalies of the skeleton, nerves, and kidneys, such diagnostics should include imaging of the spine, abdomen, and pelvis.
In patients with severe symptoms, determining the level of the AFP and β-HCG tumor markers in blood may well be helpful in addition to a basic blood analysis.
For milder progressions, regularly determining AFP and β-HCG levels in the blood and conducting regular ultrasounds of the abdomen and pelvis should be considered as well.