Worldwide the focus is on spreading the simple

message“Early detection means Saving Life and Saving

Vision.”

CANKIDS COMMITS TO SUPPORT ANY CHILD WITH RETINOBLASTOMA ANYWHERE IN THE COUNTRY

National RB Interest Group MeetingAugust 30, 2014

RB FACTS

Worldwide 15000 children are detected with RB each year. They are almost always in the age group of 2-5 years

In DEVELOPED COUNTRIES 96% of children with retinoblastoma are CURED.

Global retinoblastoma survival is less than 20%. Children die from cancer that spreads beyond the eye due to delayed diagnosis and incomplete medical care.

About 2500 young children are diagnosed with retinoblastoma every year in India. Many patients are detected late, which means they die from an otherwise curable disease.

Patients who are treated often need to have their eyeball enucleated (removed) and are left with cosmetically disfiguring condition. This is a key factor for presenting for treatment in advanced stages and abandonment.

In management jargon

RETINOBLASTOMA is The low hanging fruit

1. A childhood cancer that has very good survival rates – 95 – 99% when detected early, , has a relatively short duration of treatment which is fairly inexpensive.

2. The incidence is low – 2-2500 new cases in India each year. 3. There are national guidelines for RB treatment on the ICMR website, which many

of you have in fact contributed to. 

4. Early results from our protocol survey  across cancer and RB centres in India, show this as the one childhood cancer where there is almost universal agreement on the chemotherapy protocol to follow across the country.

5. By virtue of being one of the few childhood cancers where screening and early detection is feasible and fruitful, it lends itself to a national awareness campaign – a 45 second flash photo spot, with a clear call to action – contact us – to get an opinion and to guide and support the family for their  child’s treatment at a good RB center near their home.

SAJEEV -CANKIDS AWARENESS, ADVOCACY & PATIENT SUPPORT

FOR RETINOBLASTOMA IN INDIA

• The project aims to make an impact on Retinoblastoma and its outcomes over the next 5 years.

• It is in collaboration with specialists in the field , ophthalmologists and pediatric oncologists, as well as RB Centers across the country

• This significant step forward has been made possible by the setting up of a Corpus Fund from a very generous donor

• Planned focused interventions on specific childhood cancers to make a CHANGE FOR CHILDHOOD CANCER IN INDIA is in line with the Cankids Vision & Mission Statement

SAJEEV

CANKIDS AWARENESS & PATIENT SUPPORTFOR RETINOBLASTOMA IN INDIA

1. EARLY DETECTION

2. DIAGNOSIS AND TREATMENT AT A GOOD RB CENTER

3. IMPROVING STANDARDS OF TREATMENT, CARE AND SUPPORT AT RB CENTERS

4. PATIENT SUPPORT

5. AWARENESS AND ADVOCACY

some key interventions 2011 - 2014

• In 2011 Cankids launched a 45 second spot – to spread the message –titled “SAVE VISION SAVE LIVES” In partnership with leading Indian ocular oncologist Dr Santosh Honaver, LV Prasad Eye Institute Hyderabad, and the R.P. Center AIIMS. Cankids has edited the 45 sec AV in many regional languages beside Hindi and English, viz Gujarati, Marathi, Bengali, Oriya, Assamese, Kannada, Telegu, Tamil, and Malyalam.

•We have set up a Helpline which will guide families to these Centers, +919953591578

•A microsite rb.Cankidsindia.org for Retinoblastoma which has Been Developed by Cankids will guide Families for Nearest Treatment Centres and More Information regarding retinoblastoma; will not only help them to ask questions to Doctor but also to get themselves updated about the Disease.

• The Fund provided patient support at RB Centers like RP Center in AIIMS, IRCH and AIIM POD, TMH in Mumbai, CKGMU in Lucknow, LVPEI Hyderabad, Shroff’s Eye Hospital, Delhi, Center for Sight Hyderabad and Delhi. In 2013-14 Cankids provided support to 232 children of upto Rs 20 lakhs.

• In 2012, Cankids has started setting up an Artificial eye Support Program for Retinoblastoma Patient, ensuring good quality Artificial Eye for Patients who cannot afford Custom made eyes. Centers are being tied up to provide Artificial eye in N, S, W and East India.

• In 2014 May , during World Retinoblastoma Week provided RB awareness Kits to 12 RB Centers, 19 RIOs, conducted/funded RB awareness Programs in 5centers, online media stories , and social media awareness propagation.

3. IMPROVING STANDARDS OF TREATMENT, CARE AND SUPPORT AT

RB CENTERS • We are committed to working as a support service at RB Centers of excellence, in a phased way to identify gaps and provide interventions that would enable better standards of treatment and care.

• Thus far we have worked in AIIMS, KGMU, TMH, Shroff;s Delhi, LVPEI, Center for Sight – Hyderbad and Delhi.

• Cankids does a Needs assessment, Centers fill a questionnaire, together plan for interventions in a phased manner – year –on-year

Sr NO Iretinoblastoma CentersVolume of New Cases p.a.

No of Patients

supported by Ck 2013-

14

1Dr Rajendra Prasad Centre For Opthalmic Science, AIIMS, Delhi with AIIMS POD & IRCH 180-200 149

2 Shroffs Eye Hospital, Delhi 223 Center for Sight Delhi4 PGIMR, Chandigarh 45-505 KGMU Medical University, Lucknow 40-45 306 TMH, Mumbai 40-60 36

7 Gujrat Cancer & Research Institute, Ahmedabad 140-1608 Hinduja Hospital, Mumbai9 L V Prasad Eye Institute, Hyderabad 150 17

10 Center for Sight Hyderabad & Delhi 10011 Sankara Netralaya, Chennai 100-12012 Aravind Eye Hospital, Madurai 80-10013 Regional Cancer Centre, Trivandrum 15-18

14Regional Institute of Opthalmology, Kidwai. Bangalore

15 Narayan Nethralaya, Bangalore16 Regional Institute of Opthalmology, Kolkata 40-5017 CMRI Kolkata 19

18Sri Sankaraveda Netralaya, with Dr Barooah Cancer Institute, Guwahati, 35-40Others?????MCS, Patna 4-8PGIMS Rohtak 1-2TOTAL 1100- 1250 232dr Santosh honavar estimate 2500

Sajeev - Cankids Awareness, Advocacy & Patient Support Fund for

4. PATIENT SUPPORT Under the CK Adopt our Child

Program

ARTIFICIAL EYE 

Doesn’t she look pretty – my daughter Gungun, of the pretty eyes and beautiful smile, who stood 1st in Nursery this year.

Can you see the difference –her right eye is an artificial eye!

My baby was detected with retinoblastoma - eye cancer in

June 2006 in Lucknow. They said her eye needed to be enucleated. We rushed from CSMMU Lucknow to AIIMS,

DELHI and from there to Shankar Netralaya, Chennai. IF WE WANTED TO SAVE HER LIFE WE NEEDED TO

TAKE OUT HER EYE.

TODAY MY DAUGHTER IS COMPLETELY WELL & A 4 YEAR CANCER SURVIVOR

I WANT TO SPREAD THE MESSAGE THAT Retinoblastoma is the most curable of all

childhood cancers. That when detected in time, we can save the

life and we can also save her vision.

Priti Rastogi, Gungun’s motherSocial Worker, and Parent Support Group Member,Cankids …KidsCan, CSMMU Lucknow, Ph: + 91 9532971636pritirastogi@cankidsindia.org

The Fund will support• Awareness for RB in RB Centers and across the country• Interventions at RB Centers & Pediatric Cancer Units

• Patient Information & Patient Support.• Advocacy Initiatives

THE Fund has been set up by a generous donor Kanaka Sirpal and her son Siddhant Sirpal,

in memory of a wonderful husband and father Sajeev Sirpal.It will be supplemented by other donations as required.

www.rb.cankidsindia.org

SAVE LIVES SAVE VISION

CANKIDS…

KIDSCAN A family support group for children with

cancer and their families providing the

entire spectrum of childhood cancer

support services

Set up in Jan 2004 , under the umbrella

of Indian Cancer Society, Delhi Branch,

Members of ICCCPO – International

Confederation of Childhood Cancer

Parents Organizations; adopting the

guidelines of SIOP – International

Association of Pediatric Oncologists – as

our Mission Statement.

Because Together We Can

41

P.D.Hinduja National Hospital

and Research Centre, Mumbai

P.D.Hinduja National Hospital and Research Centre, Mumbai

Dr Savari T DesaiOculoplasty, Orbit and Ocular Oncology Surgeon, Consultant Ex Honorary Consultant : Tata Hospital

Retinoblastoma National Statement of Interest Meeting 30th August 2014, New Delhi

Hinduja Ocular Oncology ServicesIntegrated Retinoblastoma Services

Medical Oncology Team- Day care services for Chemotherapy

Radiation Oncology Team- Plaque Brachytherapy (Iodine )

Pathology -Immunohistochemistry

- Standardized Reports

• Ophthalmology• Medical oncology• Radiation Oncology• Pathology• Research

Fully Equipped Ophthalmic Dept Paediatric Vision assessment charts USG B scan Examination Under Anaesthesia

- ( With Day care Facilities)-Paediatric Anaesthetist

-Cryotherapy + local treatment

Research- Ethics review board- Annual research day- Research Support

Tumour Board Meetings every week

Hinduja Retinoblastoma Cases (2009 onwards )

Prior to 2009 : only 2-3 cases seen in the previous years for surgical managament of Enucleation

Hinduja Wish List• Equipment x Diode laser with LIO

x Retcam

• Genetics x Specific testing to be incorporated along with

counseling

• Monetary Support – Only Individual DonationsX Trust Fund

Do You Believe We Can Improve RB survival and Vision?

YES -•Awareness•Timely reference•Standardized Protocol Therapy•Data entry

Contribution

• Mass Media Campaigning– Ads– Specific Referral Centres

• Ocular Oncology Awareness : Community Project– Dr Aditi Watve, Ocular Oncologist– -Aim: To create awareness amongst non ophthalmic group– 2 seminars done : attended by 40-50 people– - Maharashtra

•

Thank You!

P.D.Hinduja Hospital and Medical Research Centre, Mumbaisavarid@hotmail.com

From PGI, Chandigarh

Post Graduate Institute of Medical Education & Research

( PGIMER ), ChandigarhDepartment of Ophthalmology, Paediatric

Haemato-Oncology and Radiotherapy

Retinoblastoma clinic, Advanced Eye Centre, PGIMER Weekly Retinoblastoma Clinic since 1996 Premier referral Center for North India Patients come from the states of Punjab, Haryana UP, HP,

Uttaranchal, Bihar, J & K, Rajasthan and Chandigarh Department of Ophthalmology collaborates with Paediatric

oncologist, and Radiation oncologist, and is supported by Pathology department in giving Hp reports

Total patients registered till now : 700

Data for the last 5 yrs[2009-2014]

Total No. of Patients: 202, Total eyes: 257

UL: 147 pts(147eyes), BL: 55 pts(110 eyes)

Male: Female 103:99 Intraocular eyes: 198Extraocular eyes: 59Family history of RB: 10 ptsFamily history of other cancer: 11 ptsExpired: 48 pts

Treatment modalities available at PGIMER All modalities other than brachytherapy available

Results

Wish List

Research In vitro diagnosis of Rb Determination of Markers for Retinoblastoma metastasis

and Survival Any other research based on the unique findings in Indian

patients Permanent Social worker devoted to

retinoblastoma High quality data for publication which has

international impact Prosthetic Lab available at reasonable rate

at PGI Creating awareness about Retinoblastoma

and motivating patients to complete scheduled treatment and follow up at central level

Do you believe we can improve RB survival and vision dramatically in the next 3-5years. How?

1. Yes, by concerted efforts of all working in this field 2. Ophthalmological exam at birth, and all levels on school entry 3. Creating awareness among teachers, gram panchayats, PHC`s, social workers working at village level 4. Active role to be played by NGO`s

What can you/ would you like to contribute to this effort?

Contribute clinically, training personal and in any way permissible by my Institute

Thank You

From TMH RB

RetinoblastomaTata memorial Centre, Mumbai

Retinoblastoma Program-TMH• 30-40 cases per year• Opthalmologist( Dr Nandan Shetye), Surgeon (Dr Sajid

Quereshi), Pediatric Oncologists(4 consultants), Radiation Oncologists(2), Pediatric solid tumor pathologist(2)

• Support from various NGOs• Multimodality approach• Poor Patients treated free of cost• Facility for surgery, RT, Chemotherapy, cryotherapy is ‘in

house’• Also routinely perform intra-arterial chemotherapy• Screening of siblings• Laser therapy referred to outside centre in Mumbai

No of New cases : 2009-13

Year No of cases2009 342010 482011 322012 372013 50Total 201

Wish List for TMH• Retinoblastoma database• Start focal therapy in TMH• Plaque radiotherapy to be initiated• Retinoblastoma nurse for counselling and tracking patients -Help to speak to family -Track patients -Screening of siblings -Ensure follow up

Improve survival and salvage vision-suggestions• Develop national guidelines for treatment• Spread awareness regarding early diagnosis -Educate pediatricians and physicians for early referral• Formulate guidelines for using other modalities of

therapy(chemotherapy, RT focal therapies etc) and avoid unnecessary enucleation

• Intensive follow up guidelines for picking up early relapse or RB in the other eye

• Ensure screening of siblings in suspected familial Retinoblastoma

• Public campaign to spread message that eyes are now more salvagable than before-would help preventing abandonment

• Identify regional centres and spread awareness to doctors regarding early referral to these centres

Contribution from TMH• Would actively participate in the setting up of working group

and develop guidelines• Would pool data to a national database• Would participate in spreading awareness and campaigns• Would be available to advise doctors in local hospitals• Would be willing to travel and educate local practitioners• Would participate in any other initiative which will help the

cause

Retiniblastoma Program @ CMRI

Corrected

Retinoblastoma Forum

Dr. Anirban Bhaduri, MSOculoplasty & Ocular Oncology Services

Suryodaya Eye CentreThe Calcutta Medical Research Centre (CMRI),

Kolkata

Retinoblastoma Program at CMRI• Comprehensve Eye Examination & Operating facility• Medical Staff trained in Ocular Oncology, Oculoplasty &

Vitreoretinal diseases• Cryo unit & Laser TTT• Pediatric Ward & ICU• Large referral base: Bengal’s largest Eye Care Institutions • Drainage Area: Bengal, Jharkhand & Bihar• In-house Imaging Centre• In-house Pathology with training in Ocular Pathology• Tie-up with Saroj Gupta Cancer Centre & Tata Medical Centre for

chemotherapy & radiotherapy support

RB Data - CMRIYear Cases Treated

2008 6 6

2009 7 7

2010 16 15

2011 8 7

2012 11 11

2013 19 12

2014 18 13

Total 84 70

Year Enucleation Chemo Cryo TTT

2008 6 2 0 0

2009 7 2 0 0

2010 15 8 2 4

2011 7 1 3 0

2012 11 5 3 2

2013 9 8 4 3

2014 11 5 3 3

Wish List• Economic support for patient’s treatment• Training of Counselor, Social worker in engaging families• Integrated database across Institutions, tracking of missing

patients & counseling their parents.• In-house chemotherapy.• In-house prosthetic facility• Documentation equipment (Video LIO)• Any affordable wide-angled retinal camera?

Can We Dramatically Improve RB survival & Vision Salvage?

Yes We Can•The management of retinoblastoma is well established. Designated treatment centers to provide protocol based care.•Public education & awareness. Need to emphasize early detection, survival, fight social & religious taboos. Effective use of media.•Effective screening measures with penetration, involve Govt. machinery – VHG, Anganwadi workers & local physicians.•Educate our Ophthalmology Colleagues.•Ensure diagnosed cases take treatment. Financial & social support to families to complete treatment.•Collaboration between treatment centers

How Would We Contribute?

• Engage in Education, Awareness & Screening Programs

• Continue supporting economically backward patients.

• Train manpower in delivering retinoblastoma treatment

• Pathology referral service

Retinoblastoma Program @ SCEH

Retinoblastoma Program

Sima DasDr Shroff’s Charity Eye Hospital

New Delhi

• Treating patients since 2010• Dedicated setup including focal therapy

modalities and in house chemotherapy since Jan 2014

Retinoblastoma Program at SCEH• Diagnostic facilities

– Pediatric eye examination setup– Pediatric anesthesia setup, same day EUA– Diagnostic modalities like B scan, UBM,FFA, fundus photography– Ocular pathology(in collaboration)– Tie up for CT scan – Screening

• Treatment facilities– In house Chemotherapy under guidance of pediatric oncologist– Focal therapy modalities like TransPupillary Thermotherapy

(TTT), cryotherapy– Pediatric eye surgery and vitreoretinal surgery setup– In house customized prosthesis lab

RB data last 4 years

• Treatment support- most patients from poor socioeconomic background

• Training of support staff- nurse , social worker, counselor

• Support for radiotherapy/brachytherapy unit

Wish list for retinoblastoma program

RB survival in next 3-5 years• Possible to improve survival in next 3-5 years

– Effective treatment protocol already in place– Training of medical, paramedical staff, patient, public

education to diagnose early– Screening for RB– Treatment only at designated centres with availability of all

multimodality treatment facilities/reduce misdiagnosis and mismanagement

– Uniform treatment protocol to be followed by all centres– Collaboration among RB treatment centres– Logistics support like travel, stay etc for patient– Public education/patient counseling- eliminate taboos and

misconceptions about disease.

SCEH contribution

• SCEH already has strong pediatric eye screening programme – RB screening can piggyback on that

• Provide manpower and resource for cme/ training programmes for medical/paramedical staff/public education

• Ongoing timely treatment of patients from socioeconomic background

Thank you

Retinoblastoma Program @CFS

Delhi

Retinoblastoma Program at Centre for Sight,

New Delhi

Dr. Vikas Menon, DNB, FLVPEI Oculoplasty and Ocular Oncology, CFS, New Delhi.

Facilities Available

• Trained Ocular Oncologist availability

• Facility for examination under anaesthesia and performing Enucleations and Exenterations

• Ocular Ultrasonography and Imaging

• Custom Ocular Prosthesis lab

• Pts requiring Chemotherapy are referred to Pediatric Oncologist

• Those requiring focal therapy are referred to CFS Hyd or SCEH,Delhi

• Detailed data (of patients seen in OPD and managed conservatively / referred elsewhere) was not available

• Surgical data of 10 eyes enucleated in last 3 years for RB was available

Wish List

• Immediate requirement of Diode laser

• Retcam, Plaque brachytherapy later

• Funds / Sponsorship for poor patients

Do you believe we can improve RB survival and vision dramatically in the next

3-5 years. How?

• Possible, provided adequate equipment / funds are available

• General public awareness campaigns

• Advocating protocol based management in treating centres

• Co-ordination between different centres offering treatment

• Targeting remote areas for spreading awareness and facilitating the travel / stay of affected family to the nearest treating centre

What can you/ would you like to contribute to this effort.

• With availability of necessary clinical skill and experience, CFS Delhi can become an important hub for complete treatment of RB patients

• Lack of some necessary equipment (Laser) and funding (in case of poor pts) is the limiting factor

Retinoblastoma Program @CMRI

Kolkata

Retinoblastoma Forum

Dr. Anirban Bhaduri, MSOculoplasty & Ocular Oncology Services

Suryodaya Eye CentreThe Calcutta Medical Research Centre (CMRI),

Kolkata

Retinoblastoma Program at CMRI• Comprehensve Eye Examination & Operating facility• Medical Staff trained in Ocular Oncology, Oculoplasty &

Vitreoretinal diseases• Cryo unit & Laser TTT• Pediatric Ward & ICU• Large referral base: Bengal’s largest Eye Care Institutions • Drainage Area: Bengal, Jharkhand & Bihar• In-house Imaging Centre• In-house Pathology with training in Ocular Pathology• Tie-up with Saroj Gupta Cancer Centre & Tata Medical Centre for

chemotherapy & radiotherapy support

RB Data - CMRIYear Cases Treated

2008 6 6

2009 7 7

2010 16 15

2011 8 7

2012 11 11

2013 19 12

2014 18 13

Total 84 70

Year Enucleation Chemo Cryo TTT

2008 6 2 0 0

2009 7 2 0 0

2010 15 8 2 4

2011 7 1 3 0

2012 11 5 3 2

2013 9 8 4 3

2014 11 5 3 3

Wish List• Economic support for patient’s treatment• Training of Counselor, Social worker in engaging families• Integrated database across Institutions, tracking of missing

patients & counseling their parents.• In-house chemotherapy.• In-house prosthetic facility• Documentation equipment (Video LIO)• Any affordable wide-angled retinal camera?

Can We Dramatically Improve RB survival & Vision Salvage?

Yes We Can•The management of retinoblastoma is well established. Designated treatment centers to provide protocol based care.•Public education & awareness. Need to emphasize early detection, survival, fight social & religious taboos. Effective use of media.•Effective screening measures with penetration, involve Govt. machinery – VHG, Anganwadi workers & local physicians.•Educate our Ophthalmology Colleagues.•Ensure diagnosed cases take treatment. Financial & social support to families to complete treatment.•Collaboration between treatment centers

How Would We Contribute?

• Engage in Education, Awareness & Screening Programs

• Continue supporting economically backward patients.

• Train manpower in delivering retinoblastoma treatment

• Pathology referral service

retinoblastoma program lvpei sent to cankids

Retinoblastoma at L V Prasad Eye Institute

Dr Swathi Kaliki, M.D.L V Prasad Eye Institute

India

Retinoblastoma program at L V Prasad Eye Institute

• Well equipped center with a trained ocular oncologist• All options of treatment are available. The treatment options include:

• Cryotherapy• Transpupillary thermotherapy• Plaque radiotherapy• Systemic/local chemotherapy• External beam radiotherapy

Data at L V Prasad Eye Institute

• Every year >150 new cases retinoblastoma are diagnosed and treated

• >50% patients are treated completely free of cost

• The survival rate in children with retinoblastoma is >90%

Wish list

• The main concern in children with retinoblastoma in India is late diagnosis

• Early diagnosis is the key to success in terms of saving vision, eye, and life

• Over the next few years, we wish early referral of cases to our center

Keys to salvage vision, eye and life

• Early diagnosis and appropriate treatment is the key to success

• Early diagnosis can be achieved with increased awareness among parents, community health workers, pediatricians, and general ophthalmologists.

Our contribution

• Conduct awareness programs during annual retinoblastoma awareness week

• Training fellows to diagnose retinoblastoma early and treat appropriately

Thank you!

Excellence

Equity

Efficiency

L V Prasad Eye Institute