5. New Treatments – RB Canada Research

Treatment & Support: New Treatments

Prospective retinoblastoma treatment studies with long-term follow-up.

A prospective treatment study follows a group of individuals assigned to receive an intervention (i.e. treatment) over a period of time, and records any changes in health status. Prospective studies are the best choice of study for producing evidence that has minimal risk of bias and confounding factors.

Why Is this part of the Top 10?

Developing high quality, collaborative prospective studies to evaluate retinoblastoma treatment will help us gain a better understanding of current and new treatment methods and how they impact tumor growth, vision, quality of life, patient outcomes, and patient safety.

Personal Story

Retinoblastoma is rare and complex. Cure and optimum outcomes depend on multiple types of treatment to save an eye, repeated frequently when the child should be playing and learning. Care is delivered by large, multidisciplinary teams to optimize outcomes. As a result, very little quality research is available to guide the care of the next child diagnosed with retinoblastoma…Quality research includes good design, clear hypothesis, rigorous eligibility and exclusion criteria, long-term follow-up, and global collaboration to make retinoblastoma not rare in clinical trials and most importantly: full parent and patient participation.
Ophthalmologist

Progress Towards This Priority

Ongoing Research

Researcher	Title
I. Aerts	Adjuvant Treatment in Extensive Unilateral Retinoblastoma Primary Enucleated (RB SFCE 2009)
R. Brennan	Protocol for the Study and Treatment of Participants With Intraocular Retinoblastoma
R. Brennan	Intravitreal Carboplatin for the Treatment of Participants With Recurrent or Refractory Intraocular Retinoblastoma
H. Chan	Combination Chemotherapy and Cyclosporine Followed by Focal Therapy for Bilateral Retinoblastoma
D. Friedman	Studying Health Outcomes After Treatment in Patients With Retinoblastoma (RIVERBOAT)
L. Lumbroso-Le Rouic	Conservative Treatments of Retinoblastoma (RETINO2011)

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.