Our 4th Annual Parent Conference was again held at Latimer Place, Chesham with the aim of informing parents and families on current and upcoming trials and research surrounding the disease affecting their children.

The 2015 conference was attended by a range of UK and international clinicians and researchers representing a variety of different countries, centres and specialities within the field. We were joined by nearly 180 delegates and hosted our first gala dinner evening, which was an opportunity for families and researchers to mingle in a social setting with good food, music and company.

To extend the benefit of having so many neuroblastoma experts gathered in one place we recorded each presentation and you can watch the videos, complete with presentations, below. We are very grateful to all the speakers who volunteered their time to attend the conference and for allowing us to share the conference videos.

Donna Ludwinski, Solving Kids’ Cancer - Neuroblastoma: Landscape of Research

Donna is the Director of Research Programmes at Solving Kids’ Cancer U.S. and also a well-known parent advocate. This talk gives a roundup of the history of clinical trials and neuroblastoma as well as explaining the trials at each phase of development and how to interpret the data. Donna goes on to explain what is happening in terms of research into neuroblastoma and what is next.

Prof John Maris, Children’s Hospital of PhiladelphiaWhat is (or isn’t) Personalised Medicine?

In this presentation, Professor Maris defines personalised or precision medicine in terms of genetics and other factors surrounding neuroblastoma as well as outlining the opportunities and obstacles presented by the field. The talk then goes on to describe an upcoming trial in the U.S. and the vision for the future of personalised medicine in neuroblastoma.

Dr Danielle Novetsky-Friedman, MSKCC, New York - Late effects in survivors of neuroblastoma

Dr Novetsky-Friedman discusses the risk of long-term and late effects of paediatric cancer treatments, focusing on neuroblastoma patients at least one-year post-treatment. The presentation displays the difference between long-term effects, which occur during or soon after treatment, such as hearing loss; and late effects, which can take many years to present, such as infertility and secondary cancers. Early detection and preventative measures are discussed along with ways of reducing risk – all detailing the rationale behind long-term follow-up and care post-cancer treatment in children. Finally, the talk details the long-term follow up programme that is followed at Memorial Sloan Kettering Cancer Centre.

Dr Brian Kushner, MSKCC, New York - Hope and optimism based on actual results

Dr Kushner’s talk focuses on introducing Memorial Sloan Kettering Cancer Centre, a world-renowned hospital in New York City. The presentation outlines the neuroblastoma treatment programme at MSKCC including induction, consolidation, and maintenance chemotherapies as well as going through options for relapsed and refractory disease. The discussion also covers MIBG therapy and pioneering research currently happening at the centre including the bivalent vaccine trial. 

Dr Andras Heczey, Baylor College of Medicine, Texas - Adoptive immunotherapy for children with neuroblastoma

Dr Heczey's presentation offers an explanation of the term adaptive immunotherapy along with details on the process surrounding the creation of the cells used in therapy. He discusses ongoing T cell trials in the U.S. including both activated T cell Trials and CAR T cells, concluding with his views on the future direction of research in the area. 

Dr Daniel Morgenstern, Great Ormond Street Hospital - Responses to parent questions

In this presentation Dr Morgenstern provides his responses on the following topics:

  • How long after treatment can we know that the cancer will not return?
  • Are there any results from the BEACON trial?
  • What clinical trials are available across Europe for relapse?
  • GA-DOTATATE therapy and LuDo trial – what can we expect?
  • Has there been any progress on bringing the DFMO trial to London?
  • Why is it important to randomise clinical trials? 

Dr Daniel Morgenstern, Great Ormond Street Hospital - CAR T-Cell Therapy for Neuroblastoma

This presentation covers the novel use of Chimeric Antigen Receptor T-Cells in pioneering research into neuroblastoma. Dr Morgenstern gives a brief overview of cancer immunotherapy in relation to neuroblastoma and then discusses CAR T-cells, what they are and how they work. The discussion surrounds the process of creating the cells from the patient in details and how they may be effective in treating the disease. There is a planned trial due to open soon at Great Ormond Street Hospital aiming to assess the effectiveness and potential toxicity of this approach which is also covered. 

Dr Juliet Gray, Southampton University - Antibody Therapies – update on what is happening in the UK and Europe

This presentation aims to give an overview of the current situation surrounding immunotherapy treatments and clinical trials in the UK and Europe. Immunotherapy offers the opportunity to very specifically target cancer cells in the body while leaving healthy cells relatively unharmed. There are targets that are only found on the surface of neuroblastoma cells and a number of trials are ongoing with the aim of harnessing the power of the immune system to tackle neuroblastoma. Dr Gray discusses the use of different antibodies; the SIOPEN High Risk Neuroblastoma-1 study as well as the use of long term infusion of antibodies with IL2 in an effort to reduce side effects. Finally, upcoming trials and studies in the pipeline are discussed. 

Dr Kate Wheeler, Oxford John Radcliffe Hospital - SIOPEN, what does it do? What does it achieve?

Dr Wheeler, as representative for the UK, discusses what SIOPEN is and explains how it works. Her presentation covers UK patients within SIOPEN and the trial portfolio within Europe (and beyond). Dr Wheeler also covers the high-risk study, parent questions, and the future direction of SIOPEN.  

Prof Frank Berthold, GPOH - Immunotherapy for high-risk neuroblastoma patients

Professor Berthold discusses the biology of neuroblastoma and the progress made in treatment over the last 20 years, focusing on immunotherapy. The presentation covers current immunotherapy trials, the rationale, and the differences between them. Professor Berthold then goes on to discuss the GPOH immunotherapy trial and the future plans. 

Dr Giuseppe Barone, The Royal Marsden Hospital - Paediatric Drug Development

Dr Barone describes why new drugs are needed for children with neuroblastoma. The presentation describes the use of targeted agents in cancer treatment and which targets are useful to explore in neuroblastoma, focusing on the ALK gene. He discusses the current and future work into ALK targeted therapies and how to improve the treatment strategy for children with cancer.