Retinoblastoma Strategy Group

The treatment sub-committee of the Retinoblastoma Strategy Group met in July to design and develop treatment protocols for advanced retinoblastoma. Two protocols were proposed: one for the treatment of patients with extraocular disease without overt signs of metastatic disease at presentation, and another for the treatment of patients with metastatic disease at first diagnosis. Protocol objectives, patient eligibility criteria, treatment and evaluation parameters were agreed upon for both studies. It is anticipated that draft versions of the two protocols will be completed by early 2002.

The INCTR Ethical Review Committee has reviewed and approved the survey study, "Understanding Problems Faced by Parents of Children with Retinoblastoma Prior to Treatment." This questionnaire was designed at the January meeting of the Strategy Group. Early feedback from investigators participating in this study has been informative. They say that parents are very willing to share their stories and that the process of obtaining information required for the questionnaire also provides an opportunity to educate parents about the disease.

INCTR is presently working with Retinoblastoma International in the preparation of a public service announcement relating to the early detection of retinoblastoma. The announcement will be linked to a popular television series called "The Bold and the Beautiful," starring Hunter Tylo.