DePICT the Cancer Care Journey: Overcome Rarity Through Collaborative Research.
Sunday February 25, 2018 | Updated Monday October 30, 2023
Brenda L. Gallie, global leader in retinoblastoma clinical care, research and innovation, introduces DePICTRB, exciting technology that supports collaboration among the child’s entire circle of care during treatment and beyond.
Why High Quality Care and Research Is So Challenging
Clinical research in retinoblastoma has failed to establish the safety and efficacy of treatments, lacking the formal clinical trials that have dramatically changed outcomes for children with other cancers. There are many reasons for this:
- Retinoblastoma is too rare in any one country.
- One or two eyes may be affected, each needing a different treatments.
- Each eye may have more than one tumor, each requiring different therapies.
- Treatment often requires hundreds of clinical encounters, often with general anaesthetic.
This complex and multidisciplinary care requires excellent collaboration between ophthalmologists, oncologists and parents to optimize outcomes. But communication across the child’s circle of care is complicated, and often fragmented and slow.
Emerging Treatment Options Offer New Hope
In November 2023, we have opportunities to change care for children affected by retinoblastoma around the world.
First, new treatments have emerged (without rigorous clinical trials) that broaden the array of treatments for each eye and each child.
Treatments for Retinoblastoma include:
- Chemotherapy can be given to the whole child (with the potential to destroy any tumor cells that might have escaped the eye), or
- Chemotherapy can be infused directly into the artery supplying the retina (intra-arterial chemotherapy, IAC), avoiding the whole body side effects of systemic chemotherapy,1 but also not 1treating any potential rogue tumor cells that escaped the eye, or
- Chemotherapy can be injected directly into the eye (intra-vitreal chemotherapy, IVitC) to kill floating tumor cells.
- As a last resort when retinoblastoma has resisted all the conventional therapies, direct surgery (vitrectomy and tumor resection) to remove the recurrent tumor is feasible, with precautions to avoid spread of tumor.
The Importance of Genetics
Although one of the rarest cancers, retinoblastoma was the first cancer recognized to be caused by genetic mutations. The international system used to describe the severity and risk for life at first cancer diagnosis (Tumor Node Metastasis, TNM), now, uniquely, includes “H” for retinoblastoma.1
Patients with bilateral retinoblastoma all carry a mutation in the retinoblastoma tumor suppressor gene, RB1, and are considered “H1”. Each of their children has a 50/50 risk of being H1, or H0 with the same risk to develop retinoblastoma as the general population. H0 children require no special care.
The children who are shown by testing to be H1 can be delivered early, and tiny tumors treated with minimal therapies.2 Since all persons who are H1 have a lifetime greater risk for other primary malignancies than people who are H0, we look forward today to new research to see if a blood test can detect these second cancers when they are small and easy to treat.3
Empowering Collaborative Care
As described in The Economist,4 the Internet is poised to empower patients and doctors in a New World of collaboration.
Over the last 15 years, the retinoblastoma team at the Hospital for Sick Children (SickKids), in partnership with the University Health Network (UHN) Techna in Toronto, Canada, have managed all retinoblastoma patients with a retinoblastoma-specific database inside SickKids. The next version, DePICTRB, is in the final stages of governance, privacy, and data security on “the Cloud”, so that the whole Circle of Care, including families, can fully participate in care of each child.
DePICTRB stands for Disease-specific electronic Patient Illustrated Clinical Timeline RetinoBlastoma.
Username: demo-user | Password: Demo1234
The “home page” of DePICTRB is a timeline, graphically illustrating all the disease-specific care that has taken place for the individual child. The Retinoblastoma Team enters data at the point-of-care, and the parents may invite others (e.g., primary care provider, family members and friends) to share read-only access to the patient’s account.
DePICTRB is a communication service for the Circle of Care, mapping the tumors in drawings, photographic and other medical images (MRI, etc) from diagnosis and through each clinical encounter, including adult follow-up (Figure 1). The data is a summary of the health record and does not replace the health care provider’s paper or electronic medical record.
Figure 1. This child’s treatment is summarized in DePICTRB.
The “legend” at the bottom indicates the meaning of each symbol. For example, the red vertical line is the “staging” EUA, when the severity of disease at diagnosis is decided based on clinical examination, to determine the TNMH stage for the child, which is shown in the upper left-hand corner. This child is H1 because he has retinoblastoma in both eyes. The retinal drawings linked to the staging EUA show active tumor in YELLOW and retinal detachment in BLUE.
The upper timeline is for the right eye, staged cT1b; the lower timeline is for the left eye, staged cT2b. Initially, this child received 5 cycles of systemic chemotherapy to the whole body (purple vertical lines), and 2 intra-arterial chemotherapy to the right eye (red triangles). The left eye was removed (yellow triangle) because the cancer was still on the optic nerve. Many other treatments over 2 years ultimately saved the right eye – shown in the green box 4 years later, with NO active tumor and good vision.
DePICTRB makes all this information available to the Circle of Care, at a glance.
Enhancing Patient Care and Research
With parent/patient consent for clinical use, DePICTRB may enhance communication and understanding of the retinoblastoma treatment course, and support life-long multidisciplinary and shared care (figure 2). Both caregivers and families will discover enhanced efficiency and disease understanding through the accessible clear data, rewarding their participation, so indexing every child diagnosed with retinoblastoma – globally – is feasible.
A separate optional consent for research will promote research both within the patient’s treatment team, and through the Global Reach consortium of the Pediatric Cancer Data Commons. Providing DePICTRB data to support global research, fostering high-level, evidence-based care.
With the goal to include ALL children and families affected by retinoblastoma, the next step will be to develop algorithms that iteratively become a Learning Health system.
Combined with fresh new approaches to treatment and public awareness of rare, but lethal childhood eye cancer, the global collaboration supported by DePICTRB can envision a day when retinoblastoma is a “Zero Death” cancer.
Figure 2. This diagram shows how DePICTRB assists the circle of care for each child with retinoblastoma to understand the care, including parents and family. The retinoblastoma team at each Retinoblastoma Center includes for example, ophthalmologists, oncologists, clinical coordinator, social worker, radiologists, genetic counsellor, anaesthetists, pathologists, radiotherapists, and ocularists, but perhaps most important, child life specialists. DePICTRB also functions as a checklist for the clinical team, with data fields giving some guidance to standardize treatment protocols between visits and treatments. The family controls view-only access to DePICTRB for their child that would commonly include family doctor, paediatrician, parents, legal guardians and ultimately the patient.
The International Retinoblastoma Consortium (IRbC), a non-profit entity situated in Toronto, Canada, looks forward to 2024 full launch of DePICTRB.
Username: demo-user | Password: Demo1234
- 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; 2017:819-831.
- Soliman SE, Dimaras H, Khetan V, et al. Prenatal versus Postnatal Screening for Familial Retinoblastoma. Ophthalmology. 2016;123(12):2610-2617.
- Shickh S, Oldfield LE, Clausen M, et al. “Game Changer”: Health Professionals’ Views on the Clinical Utility of Circulating Tumor DNA Testing in Hereditary Cancer Syndrome Management. Oncologist. 2022;27(5):e393-e401.
- Editors. Doctor You: A digital revolution in health care is coming. Welcome it. The Economist. 2018:9.
About the Author
Brenda L. Gallie, MD, FRCS(C), CM, OOnt, works with the Retinoblastoma Program in the Department of Ophthalmology and Vision Science at the Hospital for Sick Children (SickKids) in Toronto, Canada. She is Professor in the Departments of Ophthalmology, Medical Biophysics and Molecular Genetics at the University of Toronto; and Associate Scientist at the TECHNA Institute, University Health Network.
Brenda’s research and clinical practice is focused on retinoblastoma. Her pioneering work has contributed to fundamental understanding of cancer development, and provided affordable genetic tests that enhance patient care. She has fully integrated science into patient care, and looked globally to achieve an evidence base for care and equal access to care. Through Point-of-care clinical data with outcomes on all patients, and secure Internet access, the stage is set for a global learning health system, iteratively advancing care based on evidence from the bedside, everywhere.