Progress in childhood cancer data sharing to inform policy and accelerate care and research

Improving outcomes for children and young people with cancer requires extensive multi-faceted knowledge of clinical factors, tumour biology, therapeutic approaches and the health care system in which these are delivered. New approaches to data integration/linkage and analysis are now possible, to accelerate understanding of these rare and heterogeneous cancers and the factors that influence survival and morbidity.

This session aims to showcase recent initiatives to harness the power of collecting and comparing data at a large scale.  Examples will be given of the importance of standardised data for international comparisons and analysis of future trends. Ways to achieve more equitable, locally-informed cancer intelligence for national cancer control planning will be discussed. The ambition is to achieve global reach and show how data can support implementation of the WHO Global Initiative for Childhood Cancer.

Chair:  Kathy Pritchard-Jones, UCL, London, UK (Past president, SIOP)

Speakers

1. 1. Sam Volchenboum, University of Chicago, USA

   “Data for the Common Good – the Paediatric Cancer Data Commons”.

   2. Greg Reaman, Scientific Director, Childhood Cancer Data Initiative, NCI, USA

   “The NCI childhood cancer data initiative – driving progress through patient-level data sharing”.

   3. Brenda Mallon, GFAOP (Groupe Franco-Africain d’Oncologie Pédiatrique), Institut Gustav Roussy, France

   “Progress in estimating the impact of tumour stage at diagnosis on childhood cancer survival in sub-Saharan Africa”.

   4. Eva Steliarova-Foucher, IARC, Lyon, France

   “Progress in population-based cancer registration and targeting childhood cancer through the Global Initiative for Cancer Registry development (ChildGICR)”.

   5. Sarah Charnaud, WHO Global Observatory on Health Research Development

   “Understanding the cancer R&D landscape through data in the Global Observatory for Health R&D”

Panel discussion/Q&A

Panellists for panel discussion: Zuzanne Tomasikova (patient representative, CCI- Europe) , Prof. Venkatraman Radhakrishnan – Head, Department of Medical Oncology and Pediatric Oncology, Cancer Institute (W.I.A), Adyar, Chennai, India.  Co-chair of the Indian childhood cancer data initiative, lead Chennai childhood cancer registry, trainer for ChildGICR., Dr Nickhill Bhakta, paediatric oncologist, Department of Global Pediatric Medicine St Jude Children’s Research Hospital, Memphis, USA. Lead for African region within the St Jude global alliance, Dr Martina Penazzato, GAP-f lead, Research for Health Department, Science Division, WHO Geneva, Dr Roberta Ortiz, WHO, Geneva, Switzerland. Department of Non Communicable Diseases, Disability and Rehabilitation, Medical Officer, Global Initiative for Childhood Cancer

Every facility, every country: SIOP Global Mapping Programme

The SIOP Global Mapping Programme of Paediatric Oncology Services has the potential to benefit everyone, especially the children, adolescents, and young adults for whom we care. Mapping allows us to know where care is being delivered, by whom and with which resources.

We will present the current landscape of paediatric oncology services around the world and the benefits and challenges of mapping. Join us to learn about the power of mapping for professionals, patients and families, governments, non-governmental organizations, and other key stakeholders.

• Moderators: Guillermo Chantada
• Opening Message: Guillermo Chantada & Eric Bouffet

Acknowledgement Foundation S

• SIOP Global Mapping

Speaker: Maite Gorostegui (SIOP Global Mapping Programme Committee Chair)

• Impact
• Reflections
• Funding

• SIOP Europe Ocean Project

Speaker: Gilles Vassal

• CCI Project

Speaker:  Alejandra Mendez (CCI Vice president)

• Home Away from Home,  Member services (home, nutrition support), train the trainers (export successful model, standardization) “Enlace” Project (16 programmes LATAN, Asia launched 2024, Africa 2025)

• Interactive Panel Discussion

Mon 11th November @ 11:30 am – 12:30 pm  GMT 

• International Pediatric Association (IPA)
• Pediatrician focussed initiatives to improving childhood cancer outcome – Find out more here

Tue 12th November @ 7:00 am – 11:00 am  & @ 8:00 pm – 10:00 pm  GMT 

• The Global Power of Oncology Nursing Group (GPON)
• Oncology Nursing Now; Where do we stand globally? – Find out more here

Wed 13th November @ 9:30 am – 11:00 am  GMT 

• The Children’s Cancer and Leukaemia Group (CCLG)
• Data on ALL, Hodgkins and Wilms from Partner countries – improvement over time. – Find out more here

Wed 13th November @ 2:00 pm – 3:30 pm  GMT 

• World Child Cancer (WCC)
• Empowering Young Lives: Exploring the Global Impact, Benefits, and Insights of Xploro – An Innovative App Providing Essential Health Information on Childhood Cancer – Find out more here

Thu 14th November @ 9:00 am – 10:00 am  GMT 

• Creating a World Radiotherapy Awareness Day (WRAD) – Find out more here

Watch the recording of our LGCW Session “Challenges in Early Diagnosis for Childhood Cancer: Strategies that Work” from 2023 below: