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DePICTRB will make retinoblastoma a

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Presentation on theme: "DePICTRB will make retinoblastoma a"— Presentation transcript:

1 DePICTRB will make retinoblastoma a
Globally, 2 in 3 children with retinoblastoma die. For $258 per child DePICTRB will make retinoblastoma a Zero Death Cancer.

2 DePICTRB Retinoblastoma (RB) is a cancer of the infant retina
8,000 RB cases annually and 70% mortality Complex care in few centres with poor communication No standard of care for RB, a uniquely failed evidence base For $13.3 million USD, over 10 years, modern science and information technology will make RB the first Zero Death Cancer How? Deploy DePICTRB to index every RB case and enhance communication $2.8 million to onboard 180 treatment centers Manage + Maintain DePICTRB $4.9 million to create and support 51,500 patient accounts Develop RB standard of care $5.6 million to research RB treatment approaches and create a learning health system Beyond RB, demonstrate a novel approach to care optimization BG KH merged

3 DePICTRB Cost (Million, USD, 0.8 CND) Years 1 - 5 Years 6 - 10 10 Year
Deploy Personnel 1.5 0.4 1.9 Operating 0.7 0.1 0.9 Gross 2.2 0.5 2.8 Manage + Maintain 1.6 3.1 0.8 1.1 2.3 2.7 4.9 Research 4.5 0.6 5.6 7.3 6.1 13.3 Children in DePICTRB 14,023 37,500 51,523 Cost per child $518 $161 $259

4 DePICTRB Cost (Million, USD, 0.8 CND) Years 1 - 5 Years 6 - 10 10 Year
Personnel Project Coordination 2.4 1.5 3.9 Informatics 0.6 0.5 1.1 Research 2.2 2.3 4.5 Gross 5.2 4.2 9.4 Operating Office Space 1.0 2.0 Travel 0.3 0.1 0.4 Equipment 0.2 Utilities Other 0.9 2.1 1.8 7.3 6.1 13.3 Children in DePICTRB 14,023 37,500 51,523 Cost per child $518 $161 $258

5 2114 2052 Retinoblastoma Cases by Region 2016 Sub-Saharan Africa
Total Pop'n (2016 est) (million) Birth Rate* Infant Mortality Rate** Forecast Births (million) Forecast Retinoblastoma (1/17000) Sub-Saharan Africa 1033 37 53 35.9 2114 South Asia 1766 21 39 34.9 2052 East Asia & Pacific 2297 14 30.9 1820 Europe & Central Asia 912 12 8 11.2 658 Latin America & Caribbean 638 17 15 10.7 632 Arab World 406 26 29 10.4 614 Middle East & North Africa 437 23 20 10.0 587 North America 359 5 4.4 258 Central Europe and the Baltics 103 10 1.0 59 Caribbean small states 7 16 0.1 Pacific island small states 2 24 3 Sources: World Bank *births per 1,000 population (2015) **deaths per 1,000 live births (2016)

6 8080 Total Forecast Retinoblastoma Cases 2016 1442 971 234 World India
Country Name Total Pop'n (2016 est) (million) Birth Rate* Infant Mortality Rate** Forecast Births (million) Forecast Retinoblastoma (1/17000) India 1,324 19 41 24.5 1442 China 1,379 12 11 16.5 971 Nigeria 186 39 74 6.8 399 Pakistan 193 29 69 5.2 304 Indonesia 261 24 4.9 291 United States 323 6 4.0 234 Bangladesh 163 34 3.0 179 Ethiopia 102 32 45 3.2 Congo, Democratic Republic 79 43 78 3.1 183 Brazil 208 14 2.9 173 Philippines 103 23 2.4 139 Kenya 48 38 1.5 87 Canada 36 5 0.4 World 7,442 1 10435 137.4 8080 Sources: World Bank *births per 1,000 population (2015) **deaths per 1,000 live births (2016)

7 Nyamori JM, et al. Br J Ophthalmol. 2012;96:141-3.
6 to 11 mo DELAY Dx North America Unilateral Dx mean 27 mo Bilateral Dx mean 15 mo Kenya Unilateral Dx mean 36 mo Bilateral Dx mean 26 mo T1a (A) intraocular extraocular T1b (B) T2a (C/D) T2b (C/D) T3 a-e (D/E) T4 ? Nyamori JM, et al. Br J Ophthalmol. 2012;96:141-3. 3% die 70% die One disease worldwide Progress from invisible to ugly outside the eye and into the brain Awareness builds from the Internet

8 178 RB Treatment Sites September 2017
India and china Different social models 178 RB Treatment Sites September 2017

9 Username: demo-user Password: Demo1234
DePICTRB Disease-specific electronic Patient Illustrated Clinical Timeline RetinoBlastoma Username: demo-user Password: Demo1234 On Internet cloud Secure standards Fully identified Coded data for research cT2bN0M0H1* Group A cT1a Group D cT2b cT2bN0M0H1* Group A cT1a Group D cT2b cT2bN0M0H1* Group A cT1a Group D cT2b cT2bN0M0H1* Group A cT1a Group D cT2b cT2bN0M0H1* Group A cT1a Group D cT2b cT2bN0M0H1* Group A cT1a Group D cT2b cT2bN0M0H1* Group A cT1a Group D cT2b cT2bN0M0H1* Group A cT1a Group D cT2b Dimaras H, Corson TW, Cobrinik D, et al. Retinoblastoma. Nature Reviews Disease Primers. 2015:15021. *Mallipatna A, Gallie BL, Chévez-Barrios P, et al. Retinoblastoma. In: Amin MB, Edge SB, Greene FL, eds. AJCC Cancer Staging Manual. Vol 8th Edition. New York, NY: Springer; 2017:

10 Family controls view-only access
DePICTRB RB Site Team enters data Family controls view-only access Circle of Care becomes a TEAM FAMILY controls view only access DePICTRB = CHECKLIST Circle of Care = TEAM

11 DePICTRB 18 Nov 2015 Child 1 20/30 right eye cT2b left eye cT2b 20/400

12 DePICTRB

13 Eliminates the two underlying causes of RB mortality
DePICTRB Eliminates the two underlying causes of RB mortality Complex care in few centres with poor communication DePICTRB will enable: Global care provider communication, consultation, learning High quality communication across whole circle of care Inclusion of parents in circle of care Continuity of care No standard of care for RB, a uniquely failed evidence base DePICTRB will: Research treatment approaches Develop a learning health system Create an evidence-based standard of care BG KH merged

14 DePICTRB $258/child Zero deaths 2028
Not quite right….that is th cost in year 10 for the newly diagnosed in year 10 Should work out total for all kids over the 10 year? And also the number of centers.....part way estimated in .xls


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