Retinoblastoma Awareness, Screening and Early Detection at One Rb World

Monday February 27, 2023

Retinoblastoma awareness is the vital first step to cure! Early diagnosis leads to less intense treatment and better outcomes for children and their families. Sessions at every One Rb World explore how we can best raise parent, public and medical community awareness of common first signs, and develop effective screening for early detection.  Abby White gathers together sessions from the 2017, 2020, and 2021 meetings.

A photo montage of three children with white pupil glow and turned eye early signs of retinoblastoma.

One Retinoblastoma World

Retinoblastoma is a highly curable eye cancer of infancy and early childhood; however, survival rates vary dramatically between developed and developing countries, and many children worldwide lose sight due to delayed diagnosis.

Early diagnosis, access to specialist care, and family support form a critical triad in the care and cure of all children.  These three factors guide all discussions at One Retinoblastoma World.

The One Rb World conference engages eye and cancer specialists, researchers, parent and survivor advocates from around the world to pursue the best possible care for all children, survivors and their families. This interactive meeting encourages collaboration among the multi-disciplinary delegation, and rigorous international multi-center research that addresses patient priorities.  This will ultimately lead to greater knowledge and scientific evidence; improving survival, vision outcomes and psychosocial care.

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How Do We Diagnose Children Early?

Many parents ask this question when they learn about the early signs of childhood eye cancer.  Early diagnosis is a key to cure and optimal vision-saving therapy.  So how can our global community ensure children around the world have these opportunities?

Below, we have gathered together four sessions focused on awareness and early detection of retinoblastoma.  They include 17 talks, sharing professional and lived experiences from 10 countries on six continents, and international collaborative activities.  Time stamps are included for each speaker.

2017: Awareness and Screening

Our One Retinoblastoma World 2017 conference was held in Washington D.C., USA.  The event was hosted by World Eye Cancer Hope at Crystal City Marriott (Arlington, VA) on October 9 to 11.

Sessions were inspired by questions commonly asked by parents and survivors.  This awareness session was guided by the question:

Can we screen for retinoblastoma, and if not, what are the best ways to improve early diagnosis?

03:36 – Session Lead

 Sandra E. Staffieri, BAppSc(orth), PhD.

Retinoblastoma Care Coordinator, Royal Children’s Hospital, Victoria, Australia Clinical and Research Orthoptist, Centre for Eye Research Australia, University of Melbourne, Melbourne, Australia

08:49 – Think Globally, Act Locally: Awareness Campaigns Around the World – What Works; What Doesn’t, or Why is Nothing Being Done?

Sandra E. Staffieri, BAppSc(orth), PhD.

23:07 – Screening in the Developed World: Closing Gaps in Care.

Katherine Paton, M.D., FRCSC.

Clinical Professor of Ophthalmology, The University of British Colombia, Vancouver General Hospital; British Colombia Children’s Hospital, Vancouver, Canada Head, Ocular Oncology & Director of Diagnostic Ophthalmic Ultrasound Imaging, University of British Columbia, Vancouver, Canada

42:40 – Retinoblastoma in Papua New Guinea: Challenges Faced and Opportunities for Change.

Prof. Michael Sullivan.

Paediatric Oncologist, Clinical Lead Solid Tumors and Neuro-oncology, Royal Children’s Hospital, Victoria, Australia. Professorial Fellow, Department of Paediatrics, University of Melbourne Continental President (Oceania), International Society of Paediatric Oncology – Paedeatric Oncology in Developing Countries (SIOP-PODC), Geneva, Switzerland.

1:00:22 – What Does a Successful Retinoblastoma Awareness Campaign Look Like, and Does it Really Make a Difference?

Ligia Fu, M.D.

Pediatric Hematologist & Oncologist, Hospital Escuela Universitario, Tegucigalpa, Honduras.

1:14:00 – Q & A

Moderator: Sandra E. Staffieri.

2020: Retinoblastoma Awareness and Early Diagnosis

Our One Retinoblastoma World 2020 conference was held virtually on October 3 and 4, 2020.  The event was hosted jointly by World Eye Cancer Hope, the International Retinoblastoma Consortium, Canadian Retinoblastoma Research Advisory Board, and Canadian Retinoblastoma Society.

The earliest signs of retinoblastoma are leukocoria (white pupil glow) and strabismus (turned eye).  In an otherwise well child, these signs can be missed or dismissed – by both parents and health professionals.  It has long been recognized that timely diagnosis saves sight, eyes and most importantly, lives.  This is the first critical step in every child’s retinoblastoma journey.

In some low-middle income countries, significant effort and resources have been invested in raising awareness of the early signs of disease. These initiatives have led to increased survival. In high-income countries, campaigns led by retinoblastoma or cancer-specific organizations are increasing, but the impact is yet to be fully evaluated.

This session reflected on the progress and success of awareness campaigns and the role of screening – how far we have come, and how far we have yet to go.

One Retinoblastoma World 2021

Our One Retinoblastoma World 2021 conference was held virtually on October 1 to 3, 2021.  The event was hosted by World Eye Cancer Hope, with organizing team members in the USA and Australia – who will co-host our 2024 meeting in Honolulu, Hawaii (the location planned for 2021).

2021: Global Glow Detection and Retinoblastoma Awareness

The “white glow” in the pupil, described by parents at presentation, is the most common presenting sign for retinoblastoma. This session focused on how this characteristic sign can be harnessed to enhance early detection of childhood eye cancer.

0:00 – Introductions

Marissa D. Gonzalez

President and Founding Board Member, World Eye Cancer Hope USA; Retinoblastoma Survivor, Los Angeles, California, USA.

Session Lead: Cindy Mays

Retinoblastoma Parent, Los Angeles, California, USA

2:05 – Know The Glow!

Megan Webber

Co-Founder, Know the Glow, Los Angeles, California, USA.

12:00 – Arclight Project

Andrew Blaikie, MD

Senior Lecturer, University of St. Andrews; Consultant Ophthalmologist, NHS Fife, Scotland.

22:56 – Lived Experience in India

Larry Wagh, PhD Cand.

Retinoblastoma Parent, Pune, India.

28:11 – Q & A

Moderator: Cindy Mays

2021: Raising Awareness of Retinoblastoma: Thinking Outside the Box

We all seek the same goal – earlier diagnosis and better outcomes – saving lives, eyes and sight. This session showcased organizations and strategies being used around the world to improve awareness and early diagnosis of retinoblastoma.

0:00 – Session Lead

 Sandra E. Staffieri, BAppSc(orth), PhD.

Retinoblastoma Care Coordinator, Royal Children’s Hospital, Victoria, Australia; Research Fellow/Clinical Orthoptist, Centre for Eye Research Australia, University of Melbourne, Melbourne, Australia.

0:33 – Raising Awareness on a Shoestring

Petra Maxwell

Information and Research Manager, Childhood Eye Cancer Trust (CHECT), London, UK.

17:18 – Teaching the World to See – Sight for All Retinoblastoma Awareness

Jo Croft

Eye Health Educator, Optometrist – Sight for All. Adelaide, South Australia, Australia.

32:10 – All Roads Lead to Retinoblastoma Awareness: Queensland Experience.

Paula Dillon, BN, PostGradDip Mid, MMid

Retinoblastoma Parent, Brisbane, Queensland, Australia.

41:32 – From Inspiration to Implementation – The Never-Ending Story: Raising Systematic Awareness in Victoria, Australia.

Sandra E. Staffieri, BAppSc(orth), PhD

1:07:41 – Raising Healthcare Providers’ Awareness in the Virtual World

Ligia Fu MD

Pediatric Hematologist & Oncologist, Hospital Escuela Universitario, Tegucigalpa, Honduras.

1:23:56 – Q & A

Moderator: Sandra E. Staffieri

Join Us at One Rb World 2024 in Hawaii

Retinoblastoma awareness and early detection is a global challenge.  In our diverse world, there is no single solution to diagnose children early.  However, these sessions show many opportunities exist to improve awareness among health professionals and the general public in all regions of the world.

National and global collaboration between retinoblastoma specialists, researchers, parents, survivors, and other advocates can dramatically improve care for each child with eye cancer.

We are deeply thankful to everyone who contributes to the awareness discussion at One Rb World, to active research, and practical awareness raising around the world.  Your energy and dedication saves lives and sight, and gives our community hope.

We hope you will join us at future One Rb World meetings as we continue to open up the path to earlier diagnosis for optimal care!

If you would like to join our global community of clinicians, researchers, families, and survivors sharing knowledge and experience, learning from one another, and exploring priority subjects together, we welcome you to the 7th One Rb World meeting, October 15-17 2024 in Honolulu, Hawaii.  The meeting will be held just before the International Society of Paediatric Oncology World Congress which takes place 17-20 October, 2024 at the Honolulu Convention Centre.

One Rb World is community, conversation, and cooperation.  An inclusive global collaboration for optimal lifelong care.  Children are welcome too – One Rb World is proud to offer a full child life program for Rb patients, young survivors, siblings, and children of adult survivors!

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Discover the answer in our blog “When ‘Something’ Looks the Same As ‘Nothing’: Strabismus, Leukocoria and Childhood Eye Cancer“, from orthoptist and Retinoblastoma Care Co-ordinator Sandra Staffieri.

When ‘Something’ Looks the Same As ‘Nothing’: Strabismus, Leukocoria and Childhood Eye Cancer

Strabismus (turned eye) and leukocoria (white pupil), the most common signs of retinoblastoma, can also occur in healthy eyes. Sandra Staffieri, Retinoblastoma Care Co-ordinator at the Royal Children’s Hospital, Melbourne, examines both and answers the key question – when should parents and doctors be concerned?

If In Doubt, Check It Out: Common and Not-So-Common Signs and Symptoms of Retinoblastoma

Prompt investigation of signs and symptoms is vital to diagnose retinoblastoma early. Timely diagnosis provides the best opportunity to save a child’s life and sight.  For Retinoblastoma Awareness Week 2022, Rb Care Coordinator Sandra Staffieri explores the signs and symptoms that may lead to a diagnosis of childhood eye cancer.

Eye of the Storm: the impact of ‘not knowing’ on mental health

Retinoblastoma Awareness Week promotes life and sight-saving early diagnosis. Sandra Staffieri, Rb Care Coordinator at the Royal Children’s Hospital Melbourne, highlights the importance of raising awareness among parents, caregivers, health professionals and survivors; and how lack of knowledge and delayed diagnosis can impact children, parents, and adults with second cancer risk.

If You Tell Them, They Will Know: raising awareness of retinoblastoma signs can save lives, eyes and sight.

Strabismus (turned eye) and leukocoria (white pupil) are the most common early signs of retinoblastoma.  Sandra Staffieri, Rb Care Co-ordinator at the Royal Children’s Hospital, Melbourne, explores why parent and healthcare provider awareness of these signs is vital to early diagnosis of childhood eye cancer.

4 Key Ways Sharing Your Story Makes a Difference, and Tips for Telling

Every individual in the retinoblastoma community has a unique story to tell – whether parent, survivor, sibling, professional, extended family member or supporter. Abby White explores the importance of storytelling, and the many ways in which sharing your story can make a difference – to your own life, and to the world.

From CRADLE to Care: Your Photos Can Help Scientists Build an App for Parents to Diagnose Serious Child Eye Disease Early.

A White pupil is the most common early sign of eye cancer in young children, and it’s usually seen first in photos. Do you want to turn your smartphone into a powerful cancer-detector? Mark Billings, WE C Hope USA Director, tells the story behind the CRADLE app and explains how you can help scientists improve it.

Familial Retinoblastoma Screening: When Eye Cancer Runs in the Family

Familial retinoblastoma affects more than one member of the same family. Diagnosing children early provides the best opportunities for life and sight-saving care. Alison Skalet, ocular oncologist and director of the Rb service at Casey Eye Institute, Oregon Health & Science University, explores opportunities for early diagnosis when a parent, sibling or other relative has already been diagnosed.

About the Author

Abby’s father was diagnosed with bilateral retinoblastoma in Kenya in 1946. Abby was also born with cancer in both eyes. She has an artificial eye and limited vision in her left eye that is now failing due to late effects of radiotherapy in infancy.

Abby studied geography at university, with emphasis on development in sub-Saharan Africa. She co-founded WE C Hope with Brenda Gallie, responding to the needs of one child and the desire to help many in developing countries.  After receiving many requests for help from American families and adult survivors, she co-founded the US chapter to bring hope and encourage action across the country.

Abby enjoys listening to audio books, creative writing, open water swimming and long country walks.

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