Retinoblastoma is the most common eye cancer in children. A complex cancer requiring specialist care, it has potentially lifelong impacts on the child and their entire family. Research focused on early diagnosis and referral, all aspects of medical and psychosocial care, and survivorship can improve the cancer experience, outcomes, and quality of life.
The #RbResearch Alphabet of Hope highlights key questions and realities for all who research this unique cancer or fund the research, who care for affected individuals, and advocate for best patient, survivor, and family care.
We hope you enjoy this video showcasing the complete Alphabet and all the images shared throughout the year. A full text version can be found directly below the video, including links to further resources relating to the subject.
A
Access To Care is unequal globally, with poorer outcomes for children in low-resource settings. What are the main barriers to care, and how can optimal access to care be delivered, including in rural and remote communities?
Further Resources:
Access to Care is a top 10 research priority of the Canadian Retinoblastoma Research Advisory Board (CRRAB).
International Care: Challenges and Opportunities
Rb Survivor and WE C Hope CEO, Abby White explores the challenges families experience in seeking international care, and what can be done to help improve outcomes for their children.
B
Bedside to Bench to Bedside: evidence-based retinoblastoma care begins with real-world patient, survivor and family needs (bedside) that stimulate meaningful research (bench) and rigorous studies to improve care (bedside).
Further Resources:
Retinoblastoma Research: Types, Challenges, Opportunities
Rb Survivor and WE C Hope CEO, Abby White explores different types of medical research; their goals, benefits, and limitations; and opportunities to overcome the current challenges in retinoblastoma.
C
Care Pathway: Retinoblastoma care is complex and individualized. How can we best provide treatment and follow up care pathway tools that support family understanding of the care plan, reduce stress, and improve outcomes?
Further Resources:
Care Pathway is a top 10 research priority of the Canadian Retinoblastoma Research Advisory Board (CRRAB).
TNM Staging System for Retinoblastoma
Dr. Ashwin Mallipatna explains the TNM Staging System for Retinoblastoma and why it is the best approach for patient care.
D
Decisions. Parents and professionals face tough choices in retinoblastoma care. How do they navigate complex shared decision-making, and how can we all reduce risk of cognitive bias to ensure the child’s optimal care?
Further Resources:
Ethnography: A New Frontier in Retinoblastoma Research
Rb survivor and WE C Hope USA Director, Clayonia Colbert-Dorsey discusses the growing field of ethnography research, and how it can positively impact our diverse global community.
E
Early Diagnosis leads to better outcomes with less intense treatment. How can we best raise parent, public and medical community awareness of common first signs (leukocoria, “white eye reflex”; and strabismus, “turned eye”)?
Further Resources:
Early Diagnosis is a top 10 research priority of the Canadian Retinoblastoma Research Advisory Board (CRRAB).
Retinoblastoma Awareness, Screening and Early Detection at One Rb World
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. Watch the sessions from our 2017, 2020, and 2021 meetings.
“Have We Spoken Before?” Same Retinoblastoma Diagnosis Story, Different Parents…
Orthoptist and Rb care coordinator, Sandra Staffieri, and leukocoria awareness advocate, Megan Webber, are frustrated by repeated stories or diagnosis delays and their negative patient impacts. They explore why these delays continue, some efforts to overcome the challenges, and where they find hope for the future.
F
Follow Up Care is vital to detect new/relapsed retinoblastoma early, identify side effects, and address lifelong impacts and risks. How do we ensure all patients and survivors have prompt diagnosis and best care?
Further Resources:
Follow Up Care is a top 10 research priority of the Canadian Retinoblastoma Research Advisory Board (CRRAB).
Retinoblastoma Follow Up Care: the Long and Winding Road
Child Life Specialist Morgan Livingstone reviews what follow up care may involve, and tips to help families and adult survivors navigate this stage of medical care.
G
Genetic Knowledge Is key to quality care of children with retinoblastoma and blood relatives, during treatment and beyond. What do parents, survivors and professionals know and understand, and how can we improve genetic care?
Further Resources:
Meet Alice, Jamie, Megan, Rachel, Peter and their families, and find out how genetic knowledge can influence treatment, screening and lifelong care.
H
Holistic Care. Retinoblastoma is a major stressor. Needs vary between Individuals, diagnosis and treatment type. How do we provide culturally competent social, emotional and psychological support to all patients and families?
Further Resources:
Psychological Support is a top 10 research priority of the Canadian Retinoblastoma Research Advisory Board (CRRAB).
10 Child Life Tips for Clinicians
Child life specialist Morgan Livingstone shares 10 simple ways all medical professionals can ease stress and anxiety, support healthy coping, and help children and families thrive throughout simple interactions and complex cancer care.
I
Inclusion in retinoblastoma research is key to understanding long-term impacts and improving care. Researchers who work with our community can overcome the many barriers that hinder participation and real-world findings.
Further Resources:
Len Burns, a blind bilateral Rb survivor and licensed family therapist, considers four major barriers to research participation, and opportunities to overcome them.
J
Journal Access is a global challenge. Too much data remains behind a paywall. How do retinoblastoma professionals and patient families access, understand and use publications to inform care and consent? How can this improve?
Further Resources:
The Informed Parent – 6 Tips for Staying Up to Date in a Social Media World
Dr. Jesse Berry shares her recommendations for being a safely informed parent advocate in the modern hyper-connected age.
DIY Guide to Assess Medical Information and Research
This two part blog gives simple guidance that can help you effectively read and assess medical information, medical news stories and published research articles.
K
Knowledge Transfer. Three-way exchange of clinical and lived experience, and scientific progress is vital to understand and meet patient needs and develop research partnerships that improve patient and survivor care.
Further Resources:
Global Eyes: Connect, Communicate and Collaborate for Cure
We highlight two key meetings on the horizon that will unite professionals, scientists, and parents and survivors who live with the impacts of childhood eye cancer, to advance care for all.
One Retinoblastoma World Sessions Hub
Since 2017, we have livestreamed an recorded One Rb World sessions, and made them available for post-conference viewing. On our YouTube channel, they are grouped into playlists by conference year and also subject area. You can view all playlists at our Sessions Hub.
L
Lifelong: Heritable retinoblastoma survivors have increased lifelong risk of second cancers. What are the risk factors? What do survivors need to know to live well and minimize risk? How do we best share the knowledge?
Further Resources:
Lifelong Care is a top 10 research priority of the Canadian Retinoblastoma Research Advisory Board (CRRAB).
7 Survivorship Tips and Tricks: navigating the adult post-retinoblastoma world
Marissa Gonzalez, Rb survivor and President of World Eye Cancer Hope USA, shares seven tips for being an active participant in your retinoblastoma survivorship journey
Retinoblastoma Survivors’ Perspectives on Long-Term Follow up Care
Len Burns, a totally blind bilateral Rb survivor and licensed family therapist, highlights the most common survivor concerns, and potential ways to improve long term care and quality of life.
M
Multicentre: About 8000 children develop retinoblastoma worldwide each year. The strongest care-guiding evidence is produced when treatment centres collaborate. How can we improve research cooperation and reduce competition?
Further Resources:
Multicentre Collaboration is a top 10 research priority of the Canadian Retinoblastoma Research Advisory Board (CRRAB).
Multicentre Research Collaborations for Retinoblastoma
In part 1/2, Rb survivor and WE C Hope CEO, Abby White, explores the many ways multicentre research collaboration can overcome the challenges Rb research faces, to change patient care and outcomes – for the child, survivor, family and professional.
Multicentre Research Collaboration: the Challenge and the Light
Part 2 explores common challenges to multicentre collaborations, with solutions for each, and how our childhood cancer community encourages healthy, successful collaborations.
N
Neonatal: Babies born to parents with pathogenic RB1 gene have 50% retinoblastoma risk. What cancer screening, delivery plans, newborn care, and infant mental health supports are best for these babies?
Further Resources:
How Do I Create A Family When I Have An RB1 Mutation?
Melissa Mills, bilateral retinoblastoma survivor and genetic counsellor, explores the psychological and physical impacts of the Heritable Rb experience, and the different routes to creating a family when a prospective parent has an RB1 mutation..
Familial Retinoblastoma Screening: When Eye Cancer Runs in the Family
Dr. 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 with retinoblastoma.
7 Ways Caregivers Can Support Infant Mental Health during Cancer Care.
Morgan Livingstone CCLS discusses how the external environment influences infant mental health, and the varied ways parents and medical professionals can help babies cope and thrive through medical interventions.
O
Ophthalmology: retinoblastoma and its treatment impact the eye and vision, directly or years later. Vital lifelong eye care for all survivors is often inconsistent. How do we improve knowledge and ocular health care?
Further Resources:
Retinoblastoma Treatment and Vision – The Double-Edged Sword
Sandra Staffieri, orthoptist and Rb Care Co-ordinator at the Royal Children’s Hospital, Melbourne, reviews how different retinoblastoma therapies can impact the eye and vision, and how parents can support their child with changing vision.
P
PTSD affects many children with retinoblastoma, survivors, and their families. What are the causes and impacts on physical and mental health? How can we reduce risk and provide effective mental health care throughout life?
Further Resources:
Beyond Stress: PTSD Symptoms, Resources, Strategies and More
Jules Verdugo, child life & pediatric psychosocial care student, looks at the difference between normal stress reactions and PTSD, symptoms, how to get help, resources, some strategies for managing symptoms, and post traumatic growth.
Q
Questions relevant to patient care and outcomes must guide retinoblastoma research. Collaboration between clinicians, researchers, parents, patients and survivors can shape effective study focus and design.
Further Resources:
Questions to Ask the Medical Team and Yourself
When a child has Rb, asking questions empowers parents to gain knowledge and make informed Decisions. Ask many questions when making decisions about your child’s care. These question lists covering different aspects of care can help.
10 Rarely Discussed Subjects in Retinoblastoma
On Rare Diseases Day 2016, we highlighted ten important subjects rarely discussed in Rb care that profoundly impact patients and families. 7.5 years on, they all remain relatively unaddressed. But patient advocates with a collective voice and researchers who embrace patient-led research are finally helping to change this.
R
Relationships: Childhood eye cancer can strain bonds between parents, siblings, parent and child, and extended family. What factors affect relationship resilience and breakdown, and how can we best support at-risk families?
Further Resources:
Bound by Love, Unbound by Cancer: Retinoblastoma through the Lens of Relationships
Linda Conyard MGestT delves into the factors affecting relationships in a family affected by Rb, and the best ways to support families. She also explores attachment theory, and how it can help us understand family dynamics when a child has a risk for, or diagnosis of, childhood eye cancer.
S
Second Cancer: Effective screening for second cancers in people with a heritable pathogenic RB1 gene will improve early diagnosis and treatment. What is optimal screening throughout life?
Further Resources:
Second Cancer Screening is a top 10 research priority of the Canadian Retinoblastoma Research Advisory Board (CRRAB).
T
Treatments: We need high quality, prospective retinoblastoma studies with long-term follow-up to better understand current and new therapies, and their impact on tumor, vision, quality of life, patient safety, and outcomes.
Further Resources:
Advancing Treatment is a top 10 research priority of the Canadian Retinoblastoma Research Advisory Board (CRRAB).
Retinoblastoma Treatment at One Rb World
U
Unbiased. The best cancer outcomes are led by objective research. With high competition between retinoblastoma centres, how can we ensure impartial studies that empower good treatment choices and fully informed consent?
Further Resources:
Unveiling Shadows: Cognitive and Unconscious Bias in Retinoblastoma Research
The human mind can subtly influence scientific research, with potentially serious consequences for patient care and outcomes. This blog post explores the nuanced world of cognitive and unconscious biases in retinoblastoma research, and strategies that can minimize their impact to ensure objective research and the best care possible for all.
Commonly Confused Retinoblastoma Terms, What They Mean and Why Getting Them Right Matters.
Do you know the difference between lazy eye and squint or an ocular oncologist and a paediatric oncologist? Do you know when remission becomes cure or when extraocular Rb becomes metastatic, and why trilateral Rb is neither of these? We explore 18 sets of commonly confused terms, and why understanding them and using them correctly is important for effective patient care.
Retinoblastoma comes with unfamiliar medical terminology. WE C Hope’s glossaries help parents understand the language, supporting the best conversations with doctors, and more informed consent.
V
Vision Loss. Enucleation stigma may prevent timely lifesaving surgery. Psychosocial and visual development research can uncover perceived and real impacts of eye and sight loss on quality of life, and support optimal care.
Further Resources:
Enucleation and vision loss impacts are a top 10 research priority of the Canadian Retinoblastoma Research Advisory Board (CRRAB).
Destigmatizing Vision Loss Within the Retinoblastoma Community
Vision loss is a major part of the retinoblastoma experience, but rarely discussed in depth within our community. Sassy Outwater-Wright explores the trauma of vision loss, the experience of living with reduced or no sight, and pathways to living well at every age and stage of sight-loss.
Living With Vision Loss: Challenges and Changing Perspectives
WE C Hope USA President and founding board member, Marissa D. Gonzalez, recounts her journey with vision loss during two different seasons of life, and her difficult course with acquired blindness as an adult after decades of good sight.
Talking With Kids About Vision Loss
Talking with a child about Vision Loss can be difficult for parents – how to explain, how much to say, when to talk, and most important, how to listen and respond to the child. Our practical guide includes sections for both parents and kids, to encourage supportive conversation.
Living With a Special Eye (a Child Life Resource)
Many children with retinoblastoma have an eye removed to stop the cancer spreading, and save their life. They need support to participate in and own their experiences, and embrace life after enucleation. Our guide to living with a Special Eye is a practical resource for families supporting a child through this experience.
W
World Rb Registry: Pooled data boosts evidence. From awareness campaigns, incidence and care access to therapies and support programs. It can guide regional strategies to maximize resources, challenge rarity and improve care.
Further Resources:
United Against Retinoblastoma: The Importance of Global Data and Collaboration
Mattan Arazi, M.D and Ido Didi Fabian, M.D., MPH, world-focused ophthalmologists from Sheba Medical Centre, Israel, explore why global data and collaboration are so important in Rb research, and the knowledge, progress, and hope they are building for families and professional teams worldwide.
DePICT the Cancer Care Journey: Overcome Rarity Through Collaborative Research
Brenda Gallie, global leader in Rb clinical care, research and innovation, discusses an exciting technology promising to improve care during treatment and beyond. DePICTRB supports collaboration among the child’s entire circle of care, gives parents open access to their child’s record, and empowers clinical research.
X
eXpensive: Retinoblastoma research funding is vital for collaborative studies that aim to improve early diagnosis, sight and life-saving therapies, family support, survivor care, and cancer prevention. For life, foresight!
Further Resources:
Investing in Hope: The Quest to Fund Retinoblastoma Research
Research funding is vital to improve retinoblastoma early diagnosis, life and sight-saving treatment, family support, survivor care, and cancer prevention. But securing the funds for rare cancer research is very tough, often demoralising for researchers and clinician-scientists. Three retinoblastoma researchers share their experience, and two organizations helping to drive Rb research forward invite you to help.
Y
You Can! Caring for a child with retinoblastoma, and living with its effects and risks, is hard. Families, survivors, professionals and supporters – we can all contribute to research that improves care quality and outcomes.
Further Resources:
CRRAB Top 10 Retinoblastoma Research Priorities
The Canadian Retinoblastoma Research Advisory Board (CRRAB) asked families, survivors, health professionals, and researchers: “What questions would you like Rb Research to answer?“ Together, they determined the Top 10 research priorities in Canada. All 10 are globally relevant and featured in this year’s Alphabet Of Hope.
Parents and Survivors Can Help Doctors Create Great Retinoblastoma Care
Many factors, besides treatment, influence a child’s outcome from retinoblastoma. The daily lived experience can help medical professionals and researchers understand more deeply and change the future. Families and adult survivors have a key role to play in shaping the best acute and lifelong care.
Z
Zeitgeist: Patient engagement in retinoblastoma care is the spirit of our time. We collaborate to shape and support innovative, inclusive, rigorous real-world research; and holistic service delivery for the best outcomes.
Further Resources:
Beyond Borders: Retinoblastoma in Africa and the Pacific
We recap a highly successful first conference in Africa for the International Society of Ocular Oncology, and look forward to One Retinoblastoma World 2024 in Honolulu, Hawaii. With One Rb World meeting co-chairs Dr. Jesse L. Berry, Children’s Hospital Los Angeles, USA; Sandra E. Staffieri PhD, Royal Children’s Hospital Melbourne, Australia; and Marissa D. Gonzalez, World Eye Cancer Hope USA.
