Building collaborative cancer research infrastructure can improve the capacity of local healthcare workers and help develop affordable, scalable, and regionally appropriate solutions.
Less than 0.1% of global funding for childhood cancer research is allocated to institutions in LMICs. Photo: Getty Images
Contemporary management of children with cancer often involves a collaborative clinical trial setting reflecting the complexity and multimodal nature of the treatment. Clinical trials are the engine for future progress—they identify more effective therapies and they benefit future patients. Due to the relative rarity of childhood cancer, often these clinical trials involve many centres (multicentre). The first published multicentre clinical trials in childhood cancer were conducted in North America and Europe more than six decades ago; since then, remarkable progress has been made in reducing mortality.
Over 90% of children with cancer globally are diagnosed in low- and middle-income countries (LMICs), and yet a low proportion of them are enrolled in prospective multicentre trials. Research funding related to childhood cancers is small, highly fragmented, and largely inaccessible to researchers outside high-income countries (HICs). Less than 0.1% of the global funding for childhood cancer research is being allocated to institutions based in LMICs. This limits the availability of dedicated investigators and research staff, as well as training and skill development in research methodology and clinical trial design for healthcare professionals.
In the last two decades, regional collaborative initiatives in Central and South America and the Caribbean, Africa, the Middle East, Asia, and Oceania have emerged, which integrate regional capacity building, education of healthcare providers, implementation of intensity-graduated treatments, and establishment of research programs adjusted to local capacity and local needs.
For example, the Indian Pediatric Hematology Oncology Group (INPHOG) has enrolled nearly 20,000 children with cancer in 39 studies, and much of the progress in the initial years has been made in the absence of formal financial resources, with support from not-for-profit organisations and passionate investigators. In keeping with the journey of a newly established collaborative group, two out of three children enrolled have been on observational (retrospective and prospective) studies, while one out of three have been on interventional studies. These and other such efforts need to be scaled up so that most or all children with cancer in these regions have access to research studies and clinical trials.
Lack of availability of certain investigations or certain treatment modalities in LMICs make it difficult to apply the results of a clinical trial. Photo: Getty Images
The World Health Organization’s Global Initiative for Childhood Cancer, established in 2018, and the Lancet Oncology Commission on sustainable care for children with cancer, published in 2020, strongly endorse and prioritise investment in cancer research infrastructure as well as participation in collaborative research networks in LMICs. The investment will help translate research outputs into scalable, affordable, and effective solutions for children with cancer and, importantly, develop novel, innovative service delivery models that are appropriate for LMICs and do not necessarily replicate models of care in HICs. Lack of availability of certain investigations (like molecular diagnostics) or certain treatment modalities (like targeted therapy) in LMICs make it difficult to apply the results of a clinical trial from HICs to LMICs.
The focus of research in LMICs is being driven by local issues and experts. An example of this is the Collaborative African Network for Childhood Cancer Care and Research (CANCaRe Africa). Recognising that incomplete treatment for non-medical reasons (‘treatment abandonment’) is the most common cause of treatment failure in sub-Saharan Africa, a CANCaRe Africa pilot project in Malawi striving for ‘zero percent abandonment’ covered all transport costs for families to and from the hospital. This significantly reduced treatment abandonment from 19% to 7%. This is now being scaled up to nine centres in five sub-Saharan African countries through the ‘Zero Abandonment from Start to Finish’ project.
Efforts like INPHOG and CANCaRe Africa require several important ingredients. These include local leadership and ownership, multi-stakeholder engagement, clarity on objectives and priorities, and support to build research capacity among healthcare providers, data managers, and research associates.
The International Society of Pediatric Oncology is bolstering paediatric oncology clinical research infrastructure in LMICs through its Programme for Advancing Research Capacity. This includes support for hiring research staff, providing training, and developing research studies with the specific aim of enhancing the ability of LMICs to do collaborative research. Another initiative is the International Collaboration for Research Methods Development in Oncology (CReDO) workshop organized by the Tata Memorial Centre, Mumbai and the National Cancer Grid of India. The objective of this workshop is to train researchers in oncology in various aspects of clinical trial design, and to help them develop a research idea into a structured protocol.
All of these initiatives aim to assist in the development of affordable solutions for children with cancer in LMICs, implementation studies, and multicentre prospective studies to elucidate the effect of treatment in different contexts with varying socioeconomic and genetic backgrounds. Coupled with the global focus on childhood cancer, the opportunity is there for individuals, organisations and governments to fast-track progress in this area.
The opinions expressed are those of the author and do not necessarily reflect the position of Re:solve Global Health.
Dr Ramandeep Singh Arora holds a DCH, MRCPCH, and MD, and is a peediatric oncologist at Max Healthcare, New Delhi, India. He is one of the directors of the Indian Pediatric Haematology Oncology Group, which promotes collaborative research in India. Recently he has been involved with the Indian Childhood Cancer Initiative, which aims to work with the government, the World Health Organization, and other stakeholders to develop a national policy on childhood cancer.
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