One Retinoblastoma World, Dublin 2016 – Day 1

Overcoming Rarity, Life-Long Care, Building Evidence, Family and Survivor – The Most Important Perspective

Sunday November 20, 2016 | Abby White, WE C Hope CEO

The land of 100,000 welcomes warmly greeted our global childhood cancer community between 17 – 22 October.  Dublin enthusiastically hosted the 3rd One Retinoblastoma World meeting and the 48th Annual Congress of the International Society of Paediatric Oncology (SIOP).

We began the week with One Retinoblastoma World, a two-day meeting of highly committed retinoblastoma specialists, parents, survivors and advocates from six continents.

Overcoming the Rarity of Retinoblastoma

One Retinoblastoma World focuses global effort to overcome the rarity of childhood eye cancer. This movement aims to ensure every caregiver has access to appropriate knowledge, skills, resources and collaborative opportunity to enable high quality evidence based retinoblastoma care.

The meeting was opened by Ireland’s senior retinoblastoma specialist and Chair of the local organizing committee, Professor Michael O’Keefe. 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.  Prof. O’Keefe introduced a program that focused discussion on early diagnosis, medical care, survivorship, family support, global collaboration and resource mobilization.  He highlighted the unique format, each session combining presentations and round-table discussion, and encouraged full engagement to identify practical solutions that can advance effective care.

Abby White and Dr. Brenda Gallie, co-founders of the One Rb World meeting and movement, recapped the two previous meetings in London (2012) and Toronto (2014).  As with this meeting, both were held immediately before the annual world congress of the International Society of Paediatric Oncology (SIOP) to ensure maximum potential for participation by the global paediatric oncology community caring for children with retinoblastoma.  All three meetings have attracted a mix of oncologists, ophthalmologists, nurses, allied health professionals, research scientists, parents and survivors.

Over the next two days, eight sessions focused our collective expertise and energy, sharing knowledge, experience, information and ideas for innovation.

David Malkin
Michael Capra

David Malkin, Leslie Low and Michael Capra

Life-Long Care Beyond Retinoblastoma

The goal of every clinician and family is survivorship, but the challenges of survivorship and care of survivors are not readily addressed in the retinoblastoma community.  So it was refreshing to begin proceedings with this discussion.  David Malkin, Pediatric Oncologist and Chair of Cancer Genetics at SickKids Hospital, Toronto, shared the experience of developing clinical surveillance and treatment guidelines for children and adults considered to have a genetic high risk for cancer.

Leslie Low from Alberta, Canada, shared her family’s experience of raising identical triplets with retinoblastoma, highlighting the significance of RB1 genetics through their story.  As a second generation survivor, Abby White talked through the many complex challenges and needs of survivors around the world.  Michael Capra of Our Lady’s Children’s Hospital, Crumlin, Ireland, presented the concerns of the paediatric oncologist, seeking appropriate life-long follow up care for his beloved patients.

Our minds were focused on the risks many adult retinoblastoma survivors face throughout life, and how treatment decisions can have a major impact on a child’s life, in the short term during and after treatment, and many years into the future. We also acknowledged that retinoblastoma-specific follow-up care is lacking for many adult survivors, and more effort needs to be invested in meeting the healthcare needs and concerns of survivors and their families.

Building the Evidence Base for Best Care

We were delighted that François Doz, paediatric oncologist at Institut Curie in Paris, France, could join us to chair the session on advancing evidence-based care, despite his busy schedule as Chair of the Scientific Committee for SIOP.   Currently, most research takes place in developed countries where a very small percentage of children with retinoblastoma live. Guillermo Chantada, paediatric oncologist at Hospital Sant Joan de Déu, Barcelona and Hospital JP Garrahan, Buenos Aires, Argentina, highlighted that developing countries have great capacity to lead in clinical evidence.  Much vital knowledge can be gained in collaboration, and care can be improved for all children around the world.

Rachel Brennan, paediatric oncologist at St. Jude Children’s Research Hospital, TN, USA, reviewed the pathway of care from bench to bedside to survivor.  We considered the process of identifying the key questions whose answers will have real human impact.  From there, we traversed the steps necessary to translate questions into knowledge through rigorous basic science and clinical trial research.  This is the very best path to constantly improve outcomes for children, survivors and families.

Rachel Brennan

The Most Important Perspective

Retinoblastoma affects the entire family, during treatment and often for many years afterwards.  Helen Dimaras, Global Health Research Scientist at SickKids, Toronto, chaired a session on the lived experience of retinoblastoma.  Understanding and respecting the reality for the entire family and adult survivors is vital to help develop care that minimizes burdens and protects quality of life, as well as killing the cancer.

Sandra Staffieri, of the Centre for Eye Research, Melbourne, Australia, took us through the multiple challenges of achieving early diagnosis.  We explored the range of knowledge about white pupil and squint (the most common early signs of eye cancer in children), wording used in campaigns and how it can help or hinder education of the public and health workers.  We identified a need for the global retinoblastoma community to agree common messaging about the early signs to support awareness campaigns.

Marissa Gonzalez, bilateral Rb survivor and board member of WE C Hope USA, eloquently shared the vibrant highs and achingly deep lows of one family surviving this cancer.  Kaitlyn Hougham, Researcher at SickKids, Toronto, then discussed the process of developing a patient engagement strategy for retinoblastoma research in Canada – essential to ensure effective patient and family centred care.

Prof. O’Keefe extended an invitation to all present and former patient families to join the meeting for an open discussion and buffet on the afternoon of day one.  The room brimmed with parents and children, and questions, thoughts, stories and concerns shared reflected experiences shared around the world.  Every parent and survivor who speaks shares a sacred journey, battles lost and won, tears shed, hopes and fears held tight in their heart.  For each of you, we created One Retinoblastoma World, and together with all of you, we move forward to a brighter future.

Read Part 2 of our blog series, covering activities of day 2, and exciting news about One Retinoblastoma World coming to the USA in 2017.

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