Neuroblastoma Parent Education Conference 2016: ‘Understanding the Landscape of Neuroblastoma Research’

Our 5th Annual Parent Conference – ‘Understanding the Landscape of Neuroblastoma Research’ –was held at Latimer Place in Chesham. This title encapsulates the main aim of the conference: to inform parents and families on current and upcoming trials and research surrounding the disease affecting their children. Navigating the landscape can be overwhelming and this conference aimed to empower families to make informed decisions on behalf of their children.

We were joined by leading clinicians and researchers both from the UK and around the world. As well as a combination of presentations and open panels, the Conference featured our Gala Dinner, which provided more opportunities for families and researchers to network and socialise in an informal setting.

To ensure no one misses out on the information shared; all presentations – both videos and slides – are available here, corresponding to the conference agenda.

We are very grateful to all the speakers who volunteered their time to attend the conference and for allowing us to share their presentations.

Donna Ludwinski, Solving Kids’ Cancer

Introduction to Day One

Donna is the Director of Research Programmes at Solving Kids’ Cancer U.S. and also a well-known parent advocate. Donna’s presentation set the scene for our 2016 Neuroblastoma Parent Education Conference. This includes the important role of information and knowledge when faced with a neuroblastoma diagnosis, which can help parents to become effective advocates for their child. There is also recognition of how difficult it is for parents to navigate the maze of neuroblastoma therapies, especially if confronted with refractory or relapsed disease.

Professor Deborah Tweddle, Great North Children’s Hospital, Newcastle upon Tyne

Overview of high-risk neuroblastoma

Professor Tweddle is an academic paediatric oncologist with a clinical and laboratory research interest in neuroblastoma. She presents an overview of neuroblastoma, including the biology of the disease as is defined at diagnosis. She discusses how important advances in the genetic understanding of neuroblastoma have helped determine the most appropriate treatment path to be followed for each patient.

Dr. Lucas Moreno Hospital Niño Jesús, Madrid

Overview of relapse treatment/refractory disease and BEACON / BEACON 2

Dr. Moreno is a paediatric oncologist at Hospital Niño Jesús, with a specific interest in drug development for childhood cancers, focusing his research in neuroblastoma and brain tumours. Dr. Moreno presents an overview of how treatment for relapsed neuroblastoma has evolved, how relapses are currently managed, and what the future may hold. He also discusses the BEACON trial, which is a Phase 2 randomised study for patients with refractory or relapsed neuroblastoma.

Dr. Mark Gaze University College London Hospitals

Radionucide Imaging & Therapy

Dr. Gaze is a senior consultant in clinical oncology at University College London Hospitals (UCLH) and Great Ormond Street Hospital for Children (GOSH). He presents on the important use of radionuclide (MIBG) imaging and therapy in the neuroblastoma setting.

Dr. Rajen Mody, C.S. Mott Children’s Hospital, Michigan

ch14.18 + I/T + GM-CSF, COG

Dr. Mody is the Principle Investigator of the Children’s Oncology Group studies at C.S. Mott Children’s Hospital in Michigan. He is the Principal Investigator of an international Phase II, randomized trial of Chimeric 14.18 or Temsirolimus in combination with Irinotecan/ Temozolomide through the Children’s Oncology Group (COG). Dr. Mody presents the latest findings from this promising new trial, and talks about what impact this type of combination therapy could have on the future of neuroblastoma clinical research.

Professor Thorsten Simon Children’s Hospital, University of Cologne

GPOH Research and perspectives

Professor Simon is the Clinical Director of the Department for Pediatric Oncology and Hematology at the Children´s Hospital, University of Cologne. Professor Simon presents an overview of the research focus in neuroblastoma by the German Society for Paediatric Oncology and Haematology (GPOH). He analyses what has been achieved and learned from these studies to date, what challenges still remain in the treatment of neuroblastoma, and how researchers may work to develop strategies in order to overcome them.

Dr. Shakeel Modak, Memorial Sloan-Kettering Cancer Centre, New York

MSKCC, VACCINE, 3F8, hu3F8, NK Cells

Dr. Modak is a paediatric oncologist at Memorial Sloan-Kettering Cancer Centre, who specialises in the treatment of children and young adults with neuroblastoma and other solid tumours.

He presents on the MSKCC Phase I/II trial of a bivalent vaccine for high-risk neuroblastoma. Dr Modak also discusses studies involving monoclonal antibodies 3F8 (mouse cells) and hu3F8 (humanised cells), as well as the use of Natural Killer (NK) cells, which can recognise and kill abnormal cells in the body and work together with antibodies to kill target cells.

Dr. Anna-Karenia Anderson, The Royal Marsden Hospital & Shooting Star CHASE Hospices

Symptom management & care

Dr. Anderson is a consultant in paediatric palliative medicine at the Royal Marsden Hospital and Shooting Star CHASE Children’s Hospices. She presents her extensive work to ensure that the needs of children and young people with cancer are met, in terms of symptom management and palliative care. Significant pain management for children diagnosed with neuroblastoma is almost always required at diagnosis, and at times right throughout treatment. She discusses what this might comprise at each stage of the journey, which for some families can very sadly conclude with end-of-life care.

Emma Potter, Clinical Nurse Specialist, the Royal Marsden Hospital

Long-term follow up care

Emma Potter is a Clinical Nurse Specialist in the Oak Centre for Children and Young People, and has developed a long-term follow-up service to support young patients after their treatment has finished. She presents on how long-term follow-up care is organised in the UK, and what families can expect from long-term follow-up services in their areas. She also talks about the work which is undertaken to prepare and support young people and their families for life after cancer, and the important role this plays in helping childhood cancer survivors live their lives to their full potential.

Dr. Anne Kazak, Nemours/Alfred l. DuPont Hospital for Children

Post-Traumatic Stress – children and parents

Dr. Kazak is co-director of the Center for Healthcare Delivery Science at Nemours Children’s Health System, and the editor-in-chief at American Psychologist, which is the official peer-reviewed scholarly journal of the American Psychological Association. In this presentation, she shares her insights to the post-traumatic stress which can be experienced by children and parents who have faced these difficulties, as well as her work to ensure the psychosocial needs of children and families are given the consideration they require in a medical setting.

Dr. Guy Makin Royal Manchester Children’s Hospital

SIOPEN HR-NBL1, VERITAS

Dr. Makin is an honorary consultant paediatric oncologist, with a special interest in neuroblastoma and new agents for childhood cancer. Dr. Makin presents on SIOPEN HR-NBL1, the frontline trial for neuroblastoma with several randomisations. This will include an overview of frontline therapy, the questions currently being asked of this trial, and results which have been published to date – all of which children enrolled in the UK have contributed to. He also discusses what work is being done to offer possible improvements for those children who fail to show an adequate response to induction therapy, including the forthcoming VERITAS study.

Dr. Juliet Gray, University Hospital Southampton

Immunotherapy inc. INBRACED 2 – MIBG + ch14.18 + PD1

Dr. Gray is a senior lecturer in paediatric oncology within medicine at the University of Southampton. Dr. Gray presents her ongoing work in the development of new immunotherapies and immunotherapy combinations to treat neuroblastoma. This includes the forthcoming MINIVAN trial, which will be a Phase I study investigating a combination of MIBG therapy, ch14.18/CHO antibody, and an anti-PD1 antibody (Nivolumab) in children with relapsed/refractory neuroblastoma.

Professor John Anderson, Great Ormond Street Hospital

CAR T-CELL therapies

The focus of Professor Anderson’s clinical and scientific work is on neuroblastoma and high grade glioma. Professor Anderson presents his extensive on-going research into the development and use of CAR T-cell therapies against neuroblastoma.

Professor Louis Chesler, The Institute of Cancer Research

ALK, MYCN, PD(-L)1, eSMART

Professor Chesler is working to discover and develop new drugs for children’s cancers that respond poorly to existing treatment. Professor Chesler shares some of the research studies he is leading at the Institute of Cancer Research, including the ongoing work to understand the role of the MYCN oncogene, the development of new drugs against ALK gene mutations, and the use of antibodies against PD-1 and PD-L1. He also discusses the innovative eSMART trial, which will open at the Royal Marsden Hospital.

Dr. Lucas Moreno on behalf of Professor Andy Pearson, formerly the Royal Marsden Hospital and the Institute of Cancer Research

Perspectives and future challenges

Professor Pearson has achieved a long and distinguished career in the field of childhood cancer, with expertise in the fields of drug development and neuroblastoma. Dr. Moreno delivers a presentation on behalf of Professor Pearson, sharing his perspectives on the evolving landscape of neuroblastoma treatment and research, spanning his career of over 40 years. This includes some of the knowledge and experience he has gained as a leading expert in the field, with a broad view of the current landscape, and ideas on what the future may hold.

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