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Retinoblastoma Strategy Group Report

Retinoblastoma Strategy Group Report. Annual Meeting 2004. Strategy Group History. Initial Meeting – INCTR Inaugural Meeting, 1999 – Problem Identification Late presentation, lack of professional awareness, treatment of advanced retinoblastoma 19 – 20 th January, 2001

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Retinoblastoma Strategy Group Report

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  1. Retinoblastoma Strategy Group Report Annual Meeting 2004 INCTR 2004

  2. Strategy Group History • Initial Meeting – INCTR Inaugural Meeting, 1999 – Problem Identification • Late presentation, lack of professional awareness, treatment of advanced retinoblastoma • 19 – 20th January, 2001 • To formalize study of reasons for late presentation • To develop a strategic plan for improving early diagnosis • To develop agreement in a common treatment protocol for this disease INCTR 2004

  3. Strategy Group History • 13 – 14th July, 2001 • To design and develop a common treatment protocol for patients with advanced disease • 31st May, 2002 • To update group on the progress with the survey study “Understanding Problems Faced by Parents of Children with Retinoblastoma Prior to Treatment” • To discuss the proposed treatment protocol INCTR 2004

  4. Strategy Group History • 29 May, 2003 • To update group on questionnaire study progress • To finalize treatment protocol • To discuss activities related to public and professional awareness campaigns INCTR 2004

  5. Strategy Group History • 29 – 30th April, 2004 • To finalize the design of the treatment protocol for patients with extraocular retinoblastoma • To review the results of questionnaire study and to discuss problems related to the questionnaire • To revise the questionnaire and clinical data forms • To provide updates on public and professional awareness campaigns INCTR 2004

  6. Update on Public and Professional Awareness Campaigns • Brazil • Televised – Public Service Announcement • Toll-free number and address provided for viewers to call or write in for advice • Data on the number of cases diagnosed or referred is being kept (multiple hospitals/institutions providing data on cases diagnosed or referred) • Telephone Card Campaign • 1 million cards printed free and distributed to anyone purchasing a telephone care INCTR 2004

  7. Update on Public and Professional Awareness Campaigns • Mexico • Mexican Retinoblastoma Group • Ophthalmologists and pediatric oncologists interested in retinoblastoma • Studying cases of the disease • Making publications about the pattern of disease • Developing uniform treatment approaches • Standardizing methods for improving early detection • Poster Campaign • TV Public Service Announcement INCTR 2004

  8. Update on Public and Professional Awareness Campaigns • India • Professional Awareness for Ophthalmologists • Presentations on chemoreduction • International Meeting of Intraocular Tumors held in India – exposing ophthalmologists to modern treatment approaches • Public Awareness in India • Full-length movie of the story of a child with bilateral retinoblastoma • Best Feature Film of the Year in India • Indian entry at Oscars INCTR 2004

  9. Update on Public and Professional Awareness Campaigns • Turkey • Retinoblastoma Day (highly publicized in newspapers) • Improving early detection through professional education • Coordinating the retinoblastoma treatment protocol within pediatric oncology in Turkey INCTR 2004

  10. Questionnaire Study Update • Designed and initiated in 2001 • 15 institutions agreed to participate representing 11 countries • 10 institutions have submitted data INCTR 2004

  11. Questionnaire Study Update • Institutions • India - All India Institute of Medical Sciences, Tata Memorial Hospital, Cancer Institute Chennai • Mexico - Instituto Nacional de Pediatria • Turkey - Ankara University and Dokuz Euyul University • Pakistan - Shaukhat Khanum Memorial Hospital • Brazil – Santa Marcelina Hospital • Zimbabwe – University of Zimbabwe • Nigeria – OAUTHC Obafemi Awolowo University INCTR 2004

  12. Questionnaire Study Update • Other Institutions – Participated in Pilot Instituto Oncologico Del Oriente Boliviano, Bolivia Albert Einstein Hospital, Brazil • Will Contribute in Near Future • Philippines Children’s National Medical Center • Ocean Road Cancer Institute, Tanzania INCTR 2004

  13. Total Surveys Analyzed INCTR 2004

  14. Age of Parents INCTR 2004

  15. Children with Retinoblastoma • Males/Females: 57%/43% • Indian institutions had more male patients when compared to other institutions (p=0.015) • Age • Median Age: 28 months • Range: 3 months to 15 years • No significant differences in distribution of ages among institutions INCTR 2004

  16. Family History of Retinoblastoma INCTR 2004

  17. First Person to Notice a Problem INCTR 2004

  18. Action Taken by Parents After First Symptom INCTR 2004

  19. Who Parents Sought Advice From INCTR 2004

  20. Actions Taken After Initial Advice INCTR 2004

  21. Extent of Disease INCTR 2004

  22. Association of Stage • Father’s Education Level was associated with St Jude Stage • Lower education level was associated with higher stages of disease (p<0.00005) • Children from rural areas had higher stages of disease (p=0.0064) INCTR 2004

  23. Stage and Age at Diagnosis INCTR 2004

  24. Stage and Time Interval (First Symptom to Diagnosis) INCTR 2004

  25. Father’s Education Level and Time Interval (First Symptom to Diagnosis) INCTR 2004

  26. Treatment Protocol • Objectives • To assess EFS, PFS and OS in patients with extraocular retinoblastoma treated with chemotherapy, radiation therapy and surgery, if needed • To assess the toxicity of the protocol INCTR 2004

  27. Treatment of Extraocular Retinoblastoma • Eligibility Criteria • Clinical, radiographic, histopathologic evidence of retinoblastoma • Within 6 months of diagnosis • May have had a prior enucleation • Extraocular retinoblastoma as defined by: soft tissues surrounding eye, the orbit, the sclera and/or optic nerve beyond the margin of resection INCTR 2004

  28. Treatment of Extraocular Retinoblastoma • Eligibility Criteria (continued) • No evidence of extension of disease into meninges or CNS • May have other distant metastatic sites such as bone marrow, lymph nodes • Patients ages > 9 months - < 15 years • Normal serum creatinine for age INCTR 2004

  29. Treatment Protocol for Extraocular Retinoblastoma • Treatment Schema • Chemotherapy x 3 cycles • Surgery (if needed) • Chemotherapy x 3 cycles with concurrent radiation therapy • Treatment Stratified by Optic Nerve Involvement INCTR 2004

  30. Planned Activities • Continuation of Public and Professional Awareness Campaigns • Stimulate Activities within Country • Finalization of the Treatment Protocol for Extraocular Retinoblastoma INCTR 2004

  31. Retinoblastoma Strategy Group INCTR 2004

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