1st Annual Meeting of the European Society for Paediatric Oncology (SIOPE)
20-24 May 2019
Prague, Czech Republic
Leona Knox, Research Coordinator, Solving Kids’ Cancer
Together with Nick Bird (SKC Research Trustee), I attended the first ever meeting of SIOP Europe in Prague last week; bringing together researchers, clinicians, young investigators, healthcare professionals, policymakers, charities, parents, patients and survivors – all working towards a better future for children diagnosed with cancer.
This meeting was attended by over 1400 participants from 65 countries. Childhood Cancer International (CCI) Europe integrated their 10th CCI Europe Conference within the SIOP Europe Annual Meeting, thus ensuring the representation and participation of childhood cancer parents and survivors. There was a spirit of openness and collaboration in many of the sessions which was wonderful to see and be part of.
The official press release can be found here.
Precision medicine and new drug development
Nick was invited to co-chair a provocative session on the reality of precision medicine and new drug development for children with cancer in 2019, together with Prof Gilles Vassal (SIOP Europe Board Member).
Many views were shared by the panel and there was lots of debate around the definition of “precision medicine”. Prof Pam Kearns (President of SIOPE) said “I believe I am practicing precision medicine. I wouldn’t want my patients and their parents to think I wasn’t being precise. We are refining precision medicine and making it more precise not introducing it… precision diagnostics to increase stratification comes first, then more precise treatment introduced to target these groups.”
This is something the team at Solving Kids’ Cancer are striving to achieve for children with high-risk neuroblastoma, and are currently working with international experts to find an effective way to do so which can impact clinical practice in the future.
Prof Gilles Vassal was in agreement saying that the goal is to identify patients who can benefit from treatment, and not give treatment to patients who won’t benefit from it. Along this same theme there was also discussion around reducing the toxicity of treatment for children who are diagnosed with a cancer where survival is as high as 95%. It remains a challenge for researchers to find ways to replace toxic therapies which achieve this with one targeted treatment, and many feel that it is dangerous to attempt to do so. There were also calls to better characterise tumours, not only molecularly but looking at broader characteristics such as the tumour microenvironment as well.
Another important discussion centred around the Joint Action on Rare Cancers (JARC) recommendations which include easier access to information and appropriate cross-border care for all children in Europe, at minimal cost to families. The issues are well-known, but figuring out how to deal with them and quickly is not so easy.
We must continue to work with our professional colleagues and, if necessary, not be afraid to push them to do better in pursuit of goals and objectives that they themselves have committed to achieving.
Advocate representation within SIOPEN
A proposal for me to be admitted as a formal Research Advocate member of SIOPEN, the research subgroup focused on the development and delivery of European neuroblastoma studies, was approved in advance of the meeting by the SIOPEN Executive Committee chaired by Dr Dominique Valteau-Couanet.
I’m extremely pleased to be the first ever advocate to hold such a role within SIOPEN, and will now work with the SKC Scientific Advisory Board to define Terms of Reference to maximise the impact of my position; bringing a perspective, urgency and conviction to discussions that sometimes only parents can possess, and using my input and energy in the most constructive way possible to benefit children with neuroblastoma, both now and in the future.
Neuroblastoma updates from SIOPEN
Both Nick and I attended and participated in the SIOPEN open meetings of the European neuroblastoma collaborative research group, where there was standing room only and a strong representation of researchers and clinicians from the UK and Ireland.
Discussion took place around results of recent trials, strategies to help identify the best path of treatment for children with relapsed or refractory disease, the challenges faced by the research community as more and more molecular and genomic information about this disease is uncovered, and brainstorming of ideas for trials currently in design or that have potential for future development.
Dr Jan Molenaar (Princess Maxima Center) proposed the idea of developing an algorithm/decision tree for combination trials of major targets as part of an updated SIOPEN relapse strategy, with the understanding that this would require extensive work to determine what might be feasible, and also best for patients. It would provide a degree of uniformity and be compiled by collective expert opinion, rather than decisions being entirely down to individual physician preference. It would also provide an estimation of patient numbers for combinations of target therapies, and provide the best chance of accruing meaningful numbers of patients across all. The end result, however, would only ever be recommended not mandated, thus allowing for the necessary flexibility to deal with individual aspects in terms of disease and/or circumstance. The concept seemed to be very well received by everyone.
This strategic, collaborative, big picture view of potential future research is something we are very supportive of as research advocates.
Dr Lucas Moreno (Clinical Director, Paediatric Oncology & Haematology at Vall d’Hebron Barcelona Hospital) led discussions on new drug development strategies and early phase clinical trials for children with neuroblastoma, and passionately described how there are still not enough clinical trials in existence as not all children have access to novel therapies appropriate for their disease. This was also discussed at the joint ITCC/SIOPEN meeting, followed by a discussion on a French initiative to record in a registry all off-trial therapies, where children are either treated with readily available drugs outside of a clinical trial, or experimental therapies provided via a compassionate-use program.
Work in immunotherapy strategies such as MiNivAn, led by Dr Juliet Gray and co-funded by Solving Kids’ Cancer along with partners J-A-C-K and Band of Parents was also shared. Both Dr Moreno and Dr Gray are members of our Scientific Advisory Board, and we are proud to work closely with them to champion improved access to innovative therapies for children with neuroblastoma.
There were strong pleas from several speakers about how vitally important it is to record and gather information across centres and countries on patients who have relapsed but are treated outside of a clinical trial setting. Without properly storing and analysing what happens to and for these children, nothing can be learned from their survival (or devastatingly their deaths) that might be used to help other children in future. There’s no doubt in my mind that all parents would consider this situation completely unacceptable.
Analysis of radiotherapy delivered within SIOPEN HR-NBL-1 was presented by Prof Tom Boterberg, showing the impact of deviation from the protocol on the number of children who relapsed. Some of the reasons given for deviation were badly written protocols leaving them open to interpretation, and simple human error. As a parent this was particularly devastating to see, and Delphine Heenan from KickCancer spoke passionately to highlight that parents are not aware of the issue of quality control when it comes to radiotherapy, never mind the impact that it might have on our children or outcomes.
More heartingly, the SIOPE QUARTET project, funded by our friends at Fondatioun Kriibskrank Kanner in Luxembourg, is now underway and intends to improve radiotherapy treatments in children and adolescents to reduce the risk of local recurrence and long-term toxicity, by ensuring a centralised review of prospective fields and radiation treatment plans for every child and adolescent before radiotherapy in order to make necessary amendments if needed. SIOPEN HR-NBL-2, expected to open later this year, will have prospective radiotherapy quality assurance through participation in the QUARTET project. Together with Far-RMS, the new multiarm-multistage study for children and adults with localised and metastatic rhabdomyosarcoma, these will be the first projects to benefit from prospective radiotherapy oversight. It’s one thing to hear of issues being identified, but much better if remedial action is already being undertaken to improve the situation.
Another major theme was the genomic analysis of children diagnosed with high-risk neuroblastoma in order to identify patterns which might uncover groups of patients who have so far remained ‘hidden’, and who are liable to do either well or particularly badly on current standard therapies. Many researchers are working on this idea and, as previously mentioned, Solving Kids’ Cancer is hoping to help accelerate progress in this area so that prognostic biomarkers become something applicable in the clinic sooner rather than later, drawing out prognostically favourable subgroup(s) for whom therapy can be reduced or at least not intensified further, and potentially “ultra-high-risk” subgroups(s) for whom novel therapies can be identified and offered much earlier, perhaps even at diagnosis. Such projects will require substantial charitable funding and international cooperation to be able to bring them forward to benefit children as quickly as possible. Recently discovered genes responsible for neuroblastoma growth, such as TERT and ARTX, are also the subject of ongoing research to determine both their prognostic significance and also how they may be targetted therapeutically.
A key objective in SIOPEN HR-NBL-2 is to expand the biological studies to look at genomic analysis at more regular time-points as well as molecular monitoring in bone marrow and blood using new and emerging technologies such as liquid biopsies and analysis of circulating tumour cells (CTCs) and circulating tumour DNA (ctDNA). The potential implications for the future could include using such non-invasive tests as indicators of treatment response and also predictors of relapse before clinical detection on imaging or other investigations. However, much work needs to be done to correlate these new techniques with those currently in use clinically and determine the exact significance of any results before they can become part of the actual clinical management of patients.
Childhood Cancer International (CCI) Europe meeting
The 10th CCI Europe Conference was held in conjunction with SIOPE, highlighting some of the significant needs of patients, survivors, and parents right across Europe, and some of the incredible and admirable efforts to address those by the very same people. Due to some agenda clashes we weren’t able to attend all of the sessions, but a brief overview of some is shared below.
Parent conferences as a bridge to better treatment of neuroblastoma
Anastasia Zakharova from ENBI gave a powerful and very moving account of her mission, together with a small team of parents, to create the first patient organisation in Russia for families diagnosed with neuroblastoma.
The decision to create this organisation coincided with the tragic death of beautiful little Roma, the son of one of the founding members – Maria Goleva. In July 2018 their charity fund was registered and since then the group has worked tirelessly, together with doctors and Russian officials, to help find and share information for families in a more understandable way.
One of the main activities of the group is to coordinate a parent conference, bringing experts from across Russia and further afield to interact directly with parents. We exchanged details and committed to working together to share information, and we very much hope to have Anastasia, Maria, and other representatives from ENBI visit the SKC Parent Conference at some point in the future.
Inequity of access to treatment and pain relief
The inequity of access to treatment across Europe (and further afield), resulting in a huge disparity in survival rates for children suffering the same disease, was highlighted in several presentations.
One of the most distressing things discussed at every international meeting like this is the unacceptable and harrowing reality that many children with cancer still do not have adequate access to basic pain relief (including for medical procedures), even within Europe. It is difficult to comprehend all that these children and their families must face.
The commitment from Prof Pam Kearns as the newly elected President of SIOPE to work to address these inequalities now that they are known was welcomed by all, and it goes without saying that change cannot come quick enough in this regard.
Prof. Kearns stressed the importance of parents and survivors participating in the process of addressing the significant challenges that remain within the childhood cancer landscape, so that other stakeholders don’t “sit in our comfort zone”. SIOPE has several initiatives running to ensure this participation is possible, including the ACCELERATE platform which is now operating transatlantically, and as research advocates we are extremely committed to having meaningful participation in as many of these groups, Boards and platforms as possible.
You can read the full SIOPE Strategic Plan here.
Opportunities for collaboration between patient representatives and the medical community
We were delighted to see this subject discussed in the main Congress Hall, where our friends Jaap den Hartogh from PanCare and Nicole Scobie from Zoe4Life were discussants together with Prof Vassal, moderated by Anita Kienesberger from CCI Europe.
A more intimate workshop was beautifully led by Angela Pollanco from Bethany’s Wish focusing on parent and patient involvement in research. It was horrendous to hear from some of our European neighbours that they don’t even have clinical trials running in their countries, never mind opportunities for parents and patients to participate in their conception and design.
There was great interest in the fact that Delphine Heenan from KickCancer participates as an advocate in the European Paediatric Soft Tissue Sarcoma Study Group (EpSSG) and my new appointment to the SIOPE Neuroblastoma (SIOPEN) group as the first advocate member. Together with Anita Kienesberger, leader of CCI Europe which has an MOU with SIOPE, it was agreed to investigate the possibility of formalising such appointments across all study groups to ensure that advocate participation becomes a requirement.
This meeting was also a wonderful opportunity to meet face-to-face with some of our European colleagues and partners including Angela Polanco from Bethany’s Wish, Patricia Blanc from Imagine for Margo, Patricia McColgan from CanCare4Living (CC4L), Mary Claire Rennick from Childhood Cancer Foundation (CCF) and the team from Little Princess Trust.
We spent time with Dr Aine McCarthy and Dr Sheona Scales from Cancer Research UK (CRUK) to discuss some of the ongoing issues for parents and children within the UK, and we explored ideas to collaborate on some initiatives to help address them. These discussions will be ongoing for the foreseeable, and we are very hopeful that a productive partnership can be established.
Some of the dedicated individuals from Unite2Cure were in attendance, and here I am pictured with representatives from parent/patient organisations from Italy, Luxembourg, Belgium, Greece and France! It is so difficult to arrange face-to-face meetings when there is such a wide geographical spread of advocates, but we do try!
A number of delegates, including Nick, took part in the inaugural SIOP Europe Charity Run through Prague to raise awareness and funds.
There was also a beautiful dinner for the CCI Europe membership of parents, patients, patient representatives and survivors in the stunning Plzenska Restaurant. We were incredibly honoured to be in such diverse and culturally rich company, all with the same clear goals in mind.
“The cancer can be master of our bodies but we cannot let it be master of our minds and our souls.”
This is a powerful quote from a young cancer survivor who spoke at the meeting to share her work to support and help other young children now devastated by their illness, the separation from their family and friends, and the long periods of isolation.
As parents and research advocates we truly believe it is our duty to represent the needs of these children who show bravery beyond their years; and campaign, cooperate and collaborate in order that they are provided with the medicines and care they so desperately need so that one day soon cancer can no longer be master of their bodies either.
We’re already looking forward to SIOPE 2020 to be held in Valencia next May. See you there!
Leona Knox, Solving Kids’ Cancer Research Coordinator
Nick Bird, Solving Kids’ Cancer Research Director/Trustee