2. Second Cancer Screening – RB Canada Research

Detection: Second Cancer Screening

What second cancer screening is optimal for heritable retinoblastoma survivors
(including whole body magnetic resonance imaging)?

Approximately 45% of retinoblastoma patients have the heritable form of retinoblastoma. The heritable form has a risk of second cancers later in life for the patient, as well as the risk of it being passed on to the patient’s offspring.

Why Is This One of the Top 10 Retinoblastoma Research Priorities?

In order to diagnose second cancers we need effective screening protocols. Current screening practices need to be evaluated for effectiveness.

Personal Story

I am a mom of triplets who were diagnosed with bilateral retinoblastoma. This genetic mutation puts them at risk to develop other cancers throughout their lives. They are recommended to have lifelong follow up care but the missing piece is – how? We need protocols in place to catch these secondary cancers earlier and improve outcomes.
RP Parent

Progress Towards This Priority

Ongoing Research

Researcher	Title
H. Brisse	MRI Screening of Second Primary Cancer Occurring Within Radiation Fields After Treatment by External Beam Radiation Therapy for Hereditary Retinoblastoma (DepiSCARRH) (DepiSCARRH)

Completed Research

Researcher	Title
S.A. Anupindi	Diagnostic Performance of Whole-Body MRI as a Tool for Cancer Screening in Children With Genetic Cancer-Predisposing Conditions
P. de Graaf on behalf of European Retinoblastoma Imaging Collaboration (ERIC)	Guidelines for imaging retinoblastoma: imaging principles and MRI standardization
D.N. Freidman	Whole-body magnetic resonance imaging (WB-MRI) as surveillance for subsequent malignancies in survivors of hereditary retinoblastoma: a pilot study
J. Kamihara	Retinoblastoma and Neuroblastoma Predisposition and Surveillance
R.A. Kleinerman	Cancer screening practices of adult survivors of retinoblastoma at risk of second cancers
P. Temming	Incidence of second cancers after radiotherapy and systemic chemotherapy in heritable retinoblastoma survivors: A report from the German reference center

Patient Engagement Level For This Priority

Patient Engagement Legend

Limited or Unknown Engagement. For this priority, there is limited or no evidence that patients are meaningfully engaged in research.

Some Engagement. For this priority, there is evidence that patients are meaningfully engaged in some parts of research.

Full Engagement. For this priority, there is evidence that patients are meaningfully engaged in the full spectrum of research.

In order to promote patient engagement in retinoblastoma research, we have provided an estimate of the level of patient engagement for each of the Top 10 Priorities, based on what can be discerned from the published literature. This means we may have missed some research where patients are being meaningfully engaged, because it is not reported. If you think we’ve made an error, please let us know via email.