We are delighted to share an exciting update from The Artists Gallery: On Wednesday evening, we proudly hosted the launch event for SEARCH (The inaugural national research platform) for the Red Cross War Memorial Children’s Hospital.
TOP: Professor Alan Davidson (Red Cross Children’s Hospital
LEFT: Marc Hendricks (Red Cross Children’s Hospital)
MIDDLE: Professor Jeannette Parkes (Groote Schuur Hospital and UCT)
RIGHT: Chantel Cooper (The Children’s Hospital Trust)
As South Africa’s only dedicated child health institution, the Red Cross War Memorial Children’s Hospital offers a comprehensive range of specialist paediatric services. It stands as a beacon of hope and a centre of excellence, training future generations of child health professionals.
At The Artists Gallery, we deeply appreciate the extraordinary work this hospital does and the profound difference it makes in the lives of countless children and their families. This commitment to making a positive impact aligns perfectly with our own mission to inspire and uplift through art.
We are particularly proud to highlight the generosity of one of our talented artists, Tanja Davey, who donated a beautiful artwork. 100% of the proceeds from this donation have gone directly to support the SEARCH foundation.
Now, we would like to extend this opportunity to you, our valued art ambassadors. We know that you share our passion for making a difference.
If you are interested in making a donation to support this vital cause, please reach out to Alan Davidson, alan.davidson@uct.ac.za.
For more information on SEARCH and childhood cancer, please read the narrative below.
Together, we can continue to inspire and make a tangible impact in the lives of those who need it most.
SUPPORTING CHILDHOOD CANCER RESEARCH AT RED CROSS WAR MEMORIAL CHILDREN’S HOSPITAL & ACROSS THE NATION
The National Context
Childhood cancer is an important public health issue. Approximately 429 000 children worldwide develop cancer every year. 80% of these children live in low- and middle-income countries (LMIC) where there is a lot of inequality across the different regions. Many of these children are dying of potentially curable diseases because of limited access to care, late diagnosis, co-morbidities and toxicity. A key barrier to improving children’s outcomes in LMIC is the lack of accurate, population-based data on childhood cancer incidence, stage at diagnosis and survival. In stark contrast 80% of children with a cancer diagnosis in high-income countries (HIC) survive. A big factor in this success is the integration of care and research.
Research is central to improving care and outcomes for children facing a cancer diagnosis. Large international research platforms have been responsible for conducting critical research on childhood cancer in the global north for over five decades. This has led to critical improvements in overall childhood cancer survival. Children from LMIC are not being adequately included in these studies. While these children are treated using treatment guidelines based on research outcomes of this international research their outcomes are largely unknown.
While South African children have enjoyed outcomes comparable to those in HIC using instruments researched in those countries, recently published work suggests that South African children from high-income households enjoy a much higher five-year overall survival, regardless of their type of cancer, compared to those from low-income households. Work needs to be done to understand how best to improve the standard of care for all children in South Africa.
Part of the reason is that South Africa lags five decades behind most HIC in terms of having a formal national paediatric oncology research platform which acts as a custodian of prospective research. Many factors make this effort a challenge. We have a small and clinically overburdened expert community that faces large patient numbers with low doctor-patient ratios and high numbers of patients with advanced-stage diagnoses. The national situation is one of startling inequalities in the care available between provinces with supportive care limitations and uncoordinated multi-disciplinary care, on a backdrop of global austerity measures and a struggling economy.
We do have an established national registry. In 2011, Regulation no. 380 of the National Health Act no. 61 of 2003 was created to make cancer a reportable disease in South Africa. All paediatric oncology units routinely supply information to both the National Cancer Registry and the South African Children’s Tumour Registry. The data supplied to these registries consists of about 30 data points and is very limited compared to typical hospital-based registries and dedicated population-based registries.
Research in South Africa has shown that when research-driven context-specific changes are made to treatment guidelines, children can have much better outcomes. Since 2012, individual childhood cancer doctors located at public academic hospitals have led teams producing national childhood cancer treatment guidelines for individual childhood cancers. These guidelines, essentially adapted treatment regimens, have been implemented and outcomes have been examined to determine their impact on the South African population. These studies are currently ongoing for Hodgkin lymphoma, neuroblastoma and malignant extracranial germ cell tumours (MEGCT) with the rollout of two more for medulloblastoma and low-grade gliomas planned for 2024/25. When we standardize the treatment protocols, surgery and radiotherapy can be used more effectively for patients to live longer. It’s worth noting that the MEGCT protocol is led by Professor Marc Hendricks and the medulloblastoma and low-grade glioma protocols will be led by Professor Alan Davidson, both from RCWMCH/UCT.
The planned establishment of a national childhood cancer research platform (which we are calling SEARCH) serviced by a data manager, would free up critical clinical hours and accelerate the current rate of research and publication of data. This will ultimately translate into improved outcomes for children with cancer in South Africa. This is a critical step in the right direction for necessary, continued and sustainable research into effective treatment guidelines and outcomes of childhood cancer in South Africa.
The Local Context
The paediatric haematology–oncology service at Red Cross War Memorial Children’s Hospital (RCWMCH), established in 1967, is one of South Africa’s leading referral centres for blood diseases and cancer. Children up to 15 years of age are seen here whilst older children are managed at the adult oncology service at Groote Schuur Hospital (GSH). The unit that manages about 100 new cases of childhood malignancy and attracts approximately 1200 admissions and 4800 outpatient visits annually has treated over 5000 children since 1970. Of the 676 patients treated between 2011 and 2015, 538 are still alive, with about 80% of children surviving for at least 5 years.
Researchers and clinicians at the RCWMCH and GSH, who constitute the University of Cape Town (UCT) paediatric oncology complex, articulated the need for a research-ready data set during a 2013 situational analysis of cancer research. We collaborated with the Cancer Research Initiative (CRI) in the Faculty of Health Sciences and the Clinical Research Centre (CRC) at UCT to develop a hospital-based cancer registry on RedCap (HREC R046/2015), and successfully applied for a grant from CANSA for a project called ‘Responding to South Africa’s childhood cancer challenges: The RCCH/GSH/UCT paediatric cancer database.’ The grant provided the opportunity for the team to hire a database administrator until 2021.
Registries assist by tracking the incidence of cancers, assessing the extent and severity of disease at diagnosis and allowing the evaluation of outcomes and the development of research goals. Hospital-based cancer registries provide readily accessible information on patients with cancer, the treatment received and the outcomes. Specialised registries collect and maintain data on particular types of cancer and population-based cancer registries collect data on all new cases of cancer occurring in a well-defined population. There are several barriers to the implementation of childhood cancer-specific registries. Despite the recognised value of cancer registries and databases, funding and maintenance of such registries is difficult, especially in LMIC.
The primary aim of the database is to create a research-ready data set in RedCap with the ability to describe the epidemiological profile of our paediatric cancer patients and to determine factors associated with stage at presentation, progression, treatment response, survival and outcome. There are many secondary aims, including developing a platform to evaluate markers of diagnosis and severity, training and mentoring new researchers and increasing clinician-researcher capacity.
Although this was conceived as a comprehensive hospital-based registry, it has the makings of a limited population-based registry. All children under 15 years of age diagnosed with cancer in Cape Town’s West Metropolitan region are treated under a combined state and private academic complex, which includes RCWMCH, GSH and a private practice at CancerCare at Rondebosch Medical Centre with the advantage of expert, team-based academic oversight irrespective of the patient’s source of funding. If we are able to recruit all of these to the database, then we could regard our data set as being population-based. Patients referred from outside the area for treatment would need to be excluded.
The project was very successful in the short term and the results were published in the South African Journal of Oncology (Appendix 1). Apart from outcomes data, there are important findings with respect to social determinants of health and some novel findings concerning family history of associated cancers. Children whose families lived in informal housing and had no access to piped water had the same profile of tumours as the whole group but did relatively poorly. Children whose families had a history of cancer had relatively fewer cancers associated with poorer survival (AML, CNS tumours and RMS) compared with the whole group, but did relatively poorly as a group anyway. We hope to study these aspects in more detail in the future.
Before 2021 the paediatric cancer database (PCD) database administrator and the National Cancer Registry (NCR) curator worked closely together. Database entries were cross-checked against the information submitted to the NCR to ensure reliability. Gathering and curating data of the complexity that is needed requires a full-time database administrator. We were very gratified to receive support from CANSA from 2019 to 2021. It is well recognised that despite their utility for service planning, research and advocacy, registries operate with substantial fixed costs, and this poses an ongoing threat to sustainability. The struggle to fund operations, as in much of the LMIC oncology research paradigm, is an ongoing one.
The database administrator was key to the success of the Paediatric Cancer Database and was able to contribute information to the National Cancer Registry. They/she/he could also curate the Cape Town activities of the National Cancer Research Platform (SEARCH).
What we are seeking is funding for database administrators at RCWMCH and all paediatric oncology centres around the country, as well as support for the national childhood cancer research platform (SEARCH).
Thank you for your kind attention.
Alan Davidson
MBChB(UCT)DCH(SA)FCPaed(SA)CertMedOnc(paeds)(SA)MPhil(UCT)
Professor and Head, Haematology-Oncology Unit