Multicenter implementation of MR imaging studies in children with retinoblastoma for assessment of the value of craniofacial MRI screening of irradiated hereditary retinoblastoma survivors for early detection of second primary craniofacial tumors and to enhance survival

Hereditary retinoblastoma survivors have an increased risk to develop second
primary tumors (SPT) at a later age (with the highest risk in their teens),
especially when they have been irradiated for retinoblastoma. We hypothesize
that regular screening with magnetic resonance imaging (MRI) could lead to
early detection of SPTs leading to improved survival.

To evaluate the potential benefit of craniofacial MRI screening for early
detection subclinical secondary cancers of the face and brain in patients
previously irradiated for hereditary retinoblastoma.

Prospective multi-center non-invasive screening study. The total study duration
will be four years of screening plus five years of follow-up.<

Included patients will undergo yearly craniofacial MRI for a period of 4 years.
They will also be asked to fill out a psychological burden assessment form each
visit. A potential risk of screening might be associated anticipatory anxiety,
but screening also could be reassuring for patients and their parents; we are
not sure which will outweigh. False-positive results from MRI screening could
lead to unnecessary further diagnostics leading to possible added anxiety and
diagnostics (e.g., biopsies). However, this group of patients have a high risk
of developing SPTs, with poor 5-year survival statistics. Early detection and
therefore treatment of smaller earlier stage tumors, might therefore increase
survival of this patient group.