Related Experiment Video
Updated: May 13, 2026
Establishment and Propagation of Human Retinoblastoma Tumors in Immune Deficient Mice
Published on: August 4, 2011
Development and preliminary evaluation of a genetics education booklet for retinoblastoma
Taylor Irvine1, Monica Brundage2, Ashna Hudani3
1The Humanities Program, The University of Toronto, Toronto, Ontario, Canada.
Background:
Parents and survivors of retinoblastoma often hold misconceptions about the disease and desire more extensive and detailed information about its genetic nature. The aim of this study was to co-develop and evaluate a genetic education booklet for retinoblastoma.
Methods:
A human-centered design approach was employed, in which the study team consulted with clinician and patient knowledge user groups to design, produce, and refine an educational booklet. Over three phases of consultation, the study team met with each knowledge user group to review booklet prototypes and collect feedback for its further refinement. A preliminary evaluation using quantitative and qualitative methods was completed with six mothers of children with retinoblastoma.
Results:
The iterative, phased design process produced an educational booklet rich in images and stories, with complex genetic topics described in simplified terms. The preliminary evaluation showed an average improvement in knowledge between pre- and post-test questionnaire of 10%. Participants were satisfied with content and comprehensiveness of the information included in the booklet.
Conclusion:
A novel educational tool for families affected by retinoblastoma was developed through collaboration with health care and patient knowledge users. Preliminary evaluation results indicate it is feasible to implement and study the booklet in a prospective, pragmatic trial to evaluate its efficacy.
Related Concept Videos
02:46Genetic Screens
Forward genetic screens
Forward or “classical” genetic screens involve creating random mutations in an organism’s DNA using radiation, mutagens, or insertion of additional bases, which result in visible changes...
01:20The Retinoblastoma Gene
The first-ever tumor suppressor gene called Rb was identified in retinoblastoma - a rare eye tumor in children. In inherited forms of the disease, a child inherits one defective copy of the Rb gene, which predisposes them to retinoblastoma. However,...
01:20The Retinoblastoma Gene
The first-ever tumor suppressor gene called Rb was identified in retinoblastoma - a rare eye tumor in children. In inherited forms of the disease, a child inherits one defective copy of the Rb gene, which predisposes them to retinoblastoma. However,...