One Retinoblastoma World 2017

Sunday October 15, 2017

Washington D.C. hosted the 4th One Rb World meeting on 9 – 11 October, just before the 49th Annual Congress of the International Society of Paediatric Oncology (SIOP).

We are currently working with a volunteer editor to make the full content of One Rb World 2017 available to everyone online.  We hope to have this available in the Spring of 2018.

Below, we share reflections from medical professional, parent and survivor participants, and take you on a brief photographic tour of a very memorable three days.

We sincerely thank Abby Flaxer for editing these videos.

A map shows flags locating our attendees from around the world.

We asked “where in the One Rb World are you from?”, inviting delegates to respond on our map.

Two women are seated at a round table in a conference room, directly facing each other as they engage in deep discussion. The woman on the left clasps her hands on her lap and looks highly focused. The woman on the right gesticulates with both hands raised to chest level, palms facing towards the other woman, with her fingers splayed. She appears to be explaining or emphasizing a point, or trying to convey information clearly. A tablet and notepad rest on the table between the two ladies.

A delegate from Poland seeks retinoblastoma advice from Dr Kate Paton.

Parents and survivors from around the world submitted comments to Through Our Eyes.

Family and Survivor Day

Our Family and Survivor Day was the first event of its kind in the USA.  The day included a motivational talk from renowned Life Coach, Bruce Van Horn, and sessions on genetics,  child life and self care.  Panel discussions gave attendees the opportunity to put their questions to parents and survivors on a range of topics.

Of course, no trip to Washington D.C. is complete without a sightseeing tour!  In the afternoon, everyone gathered for a unique, fun bus trip around the Capital’s famous landmarks, with time to explore the most popular sites.

Families and survivors gathered in Washington from as far as California, Arizona, Nebraska, Iowa, Canada, Spain and Poland.  We were delighted to welcome such a diverse and wonderful community together – our extended One Rb World family.

Bruce Van Horn speaks, the One Rb World logo visible on the screen behind him.

Bruce Van Horn opens the first ever national US Family & Survivor Day on a motivational high.

Melissa Mills, survivor and genetic counselor, is the spirit of unity at One Rb World between parents, survivors and medical professionals.

Group photo outside the Jefferson Memorial.

Child Life Program

We were delighted to provide a full program of activities throughout One Rb World for children diagnosed with retinoblastoma, siblings and children of adult survivors. The program was led by Certified Child Life Specialist Morgan Livingstone, a dedicated member of the WE C Hope team.

In addition to free play for all ages, the program included a range of activities designed to help children understand their experience of eye cancer, their emotional responses, medical procedures and living with a special eye.

Medical Play featured prominently in the children’s chosen activities.  They had fun playing medical dress up, blowing bubbles with sedation masks, creating syringe splatter paintings and making bracelets with plastic IV tubing.

Play is the language and university of childhood.  Medical play allows children a safe way to familiarize themselves with medical materials, enabling them to gain mastery over their own medical experiences while having fun.

A baby plays with an anesthesia mask

Medical play helps babies prepare for anesthesia.

Medical play with a special puppet

Children gain mastery through medical play.

Two children sit together, one wearing a One Rb World t-shirt.

International bonds form at One Rb World.

Parent, Survivor and Professional Collaboration

When diagnosed early and treated effectively, retinoblastoma is highly curable.  No child should die, or suffer avoidable blindness, from this eye cancer.   Collaborative research, clinical care and family support to benefit the majority of children can only be developed through inclusive meetings with a real-world focus.

The One Rb World mission is to ensure that every caregiver has access to appropriate knowledge, skills, resources and collaborative opportunity to enable high quality evidence based care for each affected child, survivor and family.

 One Rb World gathers together eye and cancer specialists, researchers, parents and survivors from around the world to pursue best possible care for all affected children.

The program covers early diagnosis, medical care, family support and global collaboration. Important aspects of retinoblastoma care are explored through a combination of presentations, open floor discussion and small group work.

The program encourages collaborative effort and networking, focused on understanding the needs of the child and family, and building a solid foundation to support rigorous international multi-centre research.  This collaboration will ultimately build greater knowledge and scientific evidence, improving survival, vision outcomes and psychosocial care for all children, families and survivors.

U Shape Seating encourages collaborative discussion.
A large, diverse group of people pose together in a conference room. Most are dressed in smart casual attire. Many are smiling and waving at the camera, and those in the centre are holding a large banner that reads "One Retinoblastoma World". A large world map features on the wall behind the group. At the front, two ladies sit close together holding a plush elephant with removable eye between them. The elephant is bedecked in red, white and blue flowers.
Small group discussions

Awreness Raising and Screening for Early Diagnosis

In this session, we explored the potential and limitations of different approaches to screening and early detection around the world.  We considered practicalities of implementation, ability to measure impact, cost effectiveness and potential for long term sustainability with maximum reach.

We heard results from a global survey of awareness activities, learned about the effects of poor awareness in Papua New Guinea, and the impact of a 10 year awareness campaign in Honduras, and reviewed the new standards of care for screening of at-risk infants.

Sandra Staffieri introduces the Awareness Panel
Ligia Fu presents, the screen behind her showing the words "what does a successful retinoblastoma awareness campaign look like, and does it make a difference?"
Michael Sullivan presents, showing a map locating Papua New Guinea.

Staging Retinoblastoma

We reviewed the different staging and classification systems and staging impacts decision making for the child’s eye and holistic care.  We also examined how uniform staging and classification aids research and development of evidence based care.  We viewed a demo of DePict, a comprehensive point-of-care management tool and database that automatically stages retinoblastoma based on clinical features.  In small groups, we worked together to identify TNMH staging for children with different presentations of retinoblastoma.

A small group works together.
A small group works together.

Retinoblastoma Genetics

We unpacked the complexities of retinoblastoma genetics, examining each possible scenario and its screening, treatment, follow up care and life-long implications.  We reviewed the range of family planning options, and the genetic counselling process.  We also briefly explored the opportunities for expanding genetic knowledge to families and survivors in developing countries, and emerging areas of retinoblastoma genetics research.

Helen Dimaras leads a genetics focused session with Melissa Mills during the Family & Survivor Day.
Genetics panelists Melissa Mills, Hilary Racher and Brenda Gallie. The slide on view highlights new US guidelines for screening of babies at risk of developing retinoblastoma.
Melissa Mills discusses the different prenatal genetic testing options.

Treatment and Consent

We explored the various established retinoblastoma treatments and emerging therapies, and the indications, benefits and risks for each.  We discussed the informed consent process and how we can best help navigate and support parents through decision making and treatment planning as strong advocates for their child.

Brenda Gallie presented DePitct, a comprehensive point-of-care management system that allows parents to access their child’s complete retinoblastoma medical record alongside the care team.
Bhavna Chawla presented options for the treatment of orbital retinoblastoma – the “mission possible” proclaimed by the slide behind her.

Enucleation (eye removal surgery)

We reviewed the indications for enucleation, and the continued importance of eye removal surgery to save life, despite recent advances in eye-saving therapy. We explored surgical techniques and artificial eye process that offer optimal outcome for child’s enucleated socket and lived experience.  We also considered existing evidence for lifelong socket care and management of complications, and the challenges adult survivors in particular encounter in accessing expert care for socket issues.

Jonathan Kim stands at the lectern, introducing his Enucleation panel who are seated at a table.
Jonathan Kim presents on the changing role of enucleation, and its continued importance as life-saving treatment for retinoblastoma. The slide seen behind him is titled: “how will the role of enucleation change in the future? Three evolving scenarios are followed by their impacts: More effective screening programs – fewer advanced eyes at diagnosis; More effective primary treatment options, i.e. intra-arterial chemotherapy (fewer enucleations at diagnosis); Safer secondary treatment options, i.e. intravitreal chemotherapy (fewer enucleations after primary treatment).
Stephen Haddad describes the process of fitting an artificial eye. The slide seen behind him is titled "Final Adjustment and Fitting" and lists the different elements of the process: iris size and color, sclera color, pupil size, eyelid contours, eyelid aperture, eyelid function, iris position, gaze, projection, movement, and eyelid fold / sulcus appearance.

High Risk Features in Retinoblastoma

We explored the pathology process and the challenges involved in gaining a thorough report for every child.  We reviewed the indications for further treatment after enucleation, and debated the treatment needs for children with intermediate risk.  We also explored the research evidence and options to inform decision making, including parent involvement in the decision-making process when the child is identified as having intermediate risk of relapse.

Francois Doz discusses the debated areas of retinoblastoma pathology. The slide behind him is titled “Intermediate Risk” and is divided into four boxes. The two on the left are linked by arrows to the two on the right: “Retrolaminar involvement of the optic nerve > chemotherapy; Massive choroidal / anterior chamber / segment involvement(s) > debated”.
Murali Chintagumpala explores the debated areas of retinoblastoma pathology. The slide behind him is titled “Choroidal Invasion” with a subheading “Degree of Choroidal Invasion”. Descriptions below two microscopic pathology slide images read: (Left) FOCAL: Less than 3mm in maximum diameter and does not reach the sclera. (Right) MASSIVE: >3mm and / or tumor reaches the sclera.
WE C Hope USA President, Marissa Gonzalez meets with Luiz Teixeira, Patty Chevez-Barrios and Murali Chintagumpala.

Retinoblastoma In Developing Countries

We explored the global burden of retinoblastoma, and the challenges and opportunities for care in resource limited countries.  We considered twinning programs, impact of awareness programs and early diagnosis, potential for multi-center research, and global collaboration. We explored key challenges affecting outcomes for children seeking care in another country, and considerations to ensure optimal outcome.

Arun Singh presents on the global burden of retinoblastoma.
Lorna Renner, Luiz Teixeira and Arun Singh lead discussions on retinoblastoma care in developing countries.
Brenda Gallie contributes to the discussion on retinoblastoma care in developing countries.

Parent Advocacy

Parent Advocacy is vital throughout the Rb journey. We explored ways in which parents can help their child manage stress during their eye cancer journey and beyond.  We discussed integrated medical care solutions to protect and promote quality of life.  We also considered the fundamental value of parent intuition, and how parents and medical professionals can work together to from a strong holistic team advocating for the child’s complete wellbeing.

Sarah Green discusses advocacy from the Nurse Specialist perspective. The slide behind her is titled “Self-Advocacy” and reads: Parents can help their child learn: about their RB diagnosis; The importance of healthcare follow-up; How to independently manage their healthcare; About surveillance for second cancers (for children with genetic risk factors); How to engage in conversations with peers; How to address cultural and workforce discrimination.
Sarah Hancock highlighted the importance of parent intuition. The slide behind her is titled “My Patient” and shows a photo of her son, Damian, with the words, “Damian, RB Angel”.

Psychosocial Outcomes

We considered the small published body of evidence on outcomes for survivors of retinoblastoma and their relatives.  We explored the findings alongside the experiences of survivors who live daily with the effects of retinoblastoma.  We discussed how future studies could be developed to effectively capture accurate outcome data, and how survivors, parents, and children still in treatment can be involved in progressive research.  We acknowledged that when all stakeholders work together, we will help change the Rb experience and outcomes for the next generation of adult survivors and newly diagnosed families.

Parents, survivors and professionals working together can help improve outcomes for everyone affected by Rb.
A smiling woman and a young child, both retinoblastoma survivors, stand in front of a curved solid wall next to a vast fountain at the World War II Memorial in Washington D.C. The woman holds the child on her hip with her left arm, and an Elli plush toy in her right hand. The child’s white t-shirt says “One Retinoblastoma World”. The fountain is circled by water jets and a row of white pillars, under a clear blue sky.

Survivorship and Lifelong Care

We reviewed the long-term health risks associated with retinoblastoma and its treatment.  We will discussed approaches to long term follow up care and screening.  We explored ways in which our global community can assist parents and adults to effectively advocate for their ongoing health care needs.

Dan Gombos introduces his Survivorship Panel, David Freyer, Ruth Kleinerman and Katherine Paton.
Ruth Kleinerman presents on the second cancer risks of retinoblastoma survivors. The slide visible behind her is titled “Melanoma”, and reads: high risk compared to the general population (1/1000 persons); Ages: start in late teens; Family history of Rb; Both females and males at risk; Genetics, dysplastic nevi, sun exposure, but not treatment.
Dan Gombos presents on the challenges of obtaining effective care for the adult with distant history of Rb. The slide behind him is titled “When It’s Time For Change” and reads: Once cured – the team may change; Few transition to a survivorship clinic; Even less to a survivorship clinic with Rb experience; Some children are never told of their diagnosis; Children grow up, move, and may live very far from any Rb specialists.

Collaborative Research

We reviewed the history of retinoblastoma treatment and clinical research.  We discussed the clinical research process and what parents need to be aware of when their child is involved in research.  We explored the role of the Children’s Oncology Group in Rb research, and the potential of multicenter clinical trials to aid evidence based care.  We also learned of two new research studies emerging at Children’s Hospital LA, one opening as a multicenter clinical trial in the new year to test a new chemotherapy delivery system.

Mary Beth Aronow reviews the history and development of retinoblastoma research.

Thank You!

Thank you to everyone who participated in One Rb World this year.  Thank you for creating valuable discussion, shared learning and deeper understanding. Thank you for working together to help find ever-better ways forward.  Thank you for helping us create a future in which no child dies from retinoblastoma, no child loses sight unnecessarily, no survivor is left to flounder without appropriate life-long care, and every child, survivor and family has the compassionate support they need throughout the Rb journey.

One Rb World Program Chair, Jesse Berry MD, addresses the meeting, while event Chair and WE C Hope USA President, Marissa Gonzalez, looks on.

Two men and a woman sit at a table with computers, smartphones and papers. One man is talking into a handheld mic while the others listen.

WE C Hope USA Directors, Thomas Reid and Mark Billings, and volunteer Lisa Hester, read comments and questions from livestream viewers.

One Rb World is a golden opportunity for parents, survivors, researchers and professionals to meet, share insight, expand knowledge and advance care together.

1 reply
  1. Byju Kurian says:

    I am a Pediatric Oncology Social Worker, working in India since 2009, and really interested to learn and share more about RB in India, and know more the possibilities of working together.

    Thanks & regards!


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