Harnessing the Power of Africa’s Cancer & Cardiology Registries
Chronic diseases such as cancer and heart disease are on the rise across the African continent. WHO data suggests that almost 80% of all non-communicable disease (NCD) deaths occur in low- and middle-income countries, of which Africa comprises the majority. In Nigeria, about a third of adults are living with high blood pressure, and cancer was responsible for almost 80,000 deaths in 2022. On the continent, there were over 760,000 cancer deaths in 2022, with nearly 1.2 million new cases of cancer in the same year.
Africa is facing a distinct new challenge with the increase of NCDs, and the economic impact is becoming increasingly apparent. To tackle this new challenge, the ability to track evolving trends is crucial, as it allows governments and health officials to make data-driven decisions on resource and budget allocation.
This is where registries come in.
Simply put, a registry is a database that collects information on a large number of similar patients over time about their health, treatment patterns and outcomes. Registries typically collect data on a population that is defined by a particular disease, condition or exposure.
Cancer Registries on the Continent
Since the inception of the first cancer registry in Nigeria in the 1960s, the space has expanded to now include 13 population-based cancer registries (PBCRs) and 20 hospital-based cancer registries.
Today, the PBCRs in the country are coordinated by the Nigerian National System of Cancer Registries (NSCR). The NSCR was established in 2009 in a collaborative effort between the Federal Ministry of Health, the Society of Oncology and Cancer Research of Nigeria and the Institute of Human Virology of Nigeria. The primary objectives of the NSCR are to provide training, capacity development, monitoring, and technical and scientific support to cancer registries in Nigeria.
As a result of efforts to train 80 staff from 24 cancer registries over five years, the NSCR was able to get data from 3 Nigerian registries in Ibadan, Abuja and Calabar published in the GLOBOCAN in 2012 - GLOBOCAN is an internationally recognised database providing global cancer statistics and estimates of incidence and mortality in 185 countries. Additionally, the NSCR transitioned an Enugu cancer registry to a population-based cancer registry (PBCR) and established a new PBCR in Sokoto.
Looking to other similar Sub-Saharan African countries, Ghana and South Africa emerge as countries with active cancer registry systems. The Kenya Medical Research Institute (KEMRI) and the Nairobi and Eldoret cancer registries regularly publish data in GLOBOCAN. Additionally, as a result of data collection efforts, KEMRI was designated as the Sub-Sahara Centre for the International Agency for Research on Cancer (IARC), the platform that houses GLOBOCAN data. While the history of cancer registries in Ghana has been challenging, the Accra cancer registry was initiated in collaboration with Stanford University and successfully published data in the GLOBOCAN in 2012 and 2018.
Cardiology Registries on the Continent
Although more limited in number, cardiology registries also exist in the country, with registries for pediatric cardiology, adult cardiology and cardiac surgery. In the cardiology space, one of the key registries in Nigeria is the Nigeria Open-Heart Surgery Registry. This registry was established at the 49th Annual General Meeting of the Nigerian Cardiac Society (NCS) in 2020 and is also supported by the Association of Cardiovascular and Thoracic Surgeons of Nigeria (ACTSON). The registry provides data on open heart surgery in Nigeria to make the practice of heart surgery in the country an evidence-based approach driven by robust registry activity.
The registry provides statistics on the itemised cost of complex procedures such as mitral valve replacement (MVR) and annual data on the number of surgeries conducted at leading public and private cardiology institutions across the country (e.g., LASUTH, First Cardiology Lagos, OAUTH, Evercare, etc.). Other data published by the registry include pediatric vs. adult cases and the distribution of cases across surgical procedures (MVR, coronary artery bypass graft (CABG), etc.).
The robustness of data allows for the identification of interesting trends, such as the fact that First Cardiology Lagos conducted the highest number of open heart surgeries in 2023 at 40 cases; MVR, CABG and atrial septal defect (ASD) repair surgeries are the most common procedures among adults; and ventricular septal defect (VSD) repair, tetralogy of Fallot (TOF) total correction and atrioventricular septal defect (AVSD) repair were the most common procedures among pediatric patients in the country.
More broadly, other cardiology registries exist on the continent. For example, the Pan African Pulmonary Hypertension Cohort (PAPUCO) is the only registry for pulmonary hypertension in Africa. The PAPUCO, established in 2011, is a multinational registry of 254 consecutive patients from 9 specialist care referral centres in 4 African countries (Cameroon, Mozambique, Nigeria, and South Africa). The registry collected data, among others, on cardiovascular risk factors, environmental exposures, medical history, prescribed treatments, and patient outcomes such as hospitalisations and death. This pan-African effort is laudable and provides a framework that individual African countries can follow to set up more country-level cardiology registries.
Leveraging Registry Data for Healthcare Advancements
Registries in Africa have the potential to significantly improve patient access to healthcare and clinical and financial outcomes at the hospital and country levels. Registry data can also boost the healthcare industry from both a public and private sector perspective.
From a public sector perspective, as chronic diseases become more prevalent and drive costs up, it is essential to have data to identify and track trends and evolving dynamics. Epidemiology data from registries can play a vital role in providing the information needed to identify these trends. While the data on the economic consequences of chronic diseases in Sub-Saharan Africa are scarce, there is compelling evidence to suggest that these costs are rising. Registries are important in providing the data needed to develop policies and allocate resources and budgets to manage these costs effectively.
Governments can also leverage registry data to enhance preventive measures and early detection strategies for chronic diseases like cancer and heart disease. While the NPHCDA has recently rolled out a mass HPV vaccination campaign in 16 states for girls 9-14 years old in Nigeria, there is still no national screening program for cervical cancer. No national screening programs exist for colorectal and prostate cancer either, even though these are among the top 3 deadliest cancers in the country as of 2022. Studies have shown that population-wide, preventive strategies to tackle CVD in Sub-Saharan Africa and Southeast Asia are highly cost-effective, highlighting the importance of screening programs and early detection strategies.
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In the private sector, registry data could prompt advancements in research and development initiatives. Several health tech startups and newly formed organisations on the continent are dedicated to collecting data on African patients to contribute to scientific research and new drug development for chronic diseases. One example is Yemaachi Biotech, a Ghana-based precision oncology company developing cancer diagnostics and drugs based on sequencing data from African populations. The company has collected and sequenced large samples to create the first Pan-African clinical and genomic database. Recently, Yamaachi received a $25 million grant from the Cancer Grand Challenges initiative. Registry data could support biotechs on the continent that need local patient data and new healthcare startups that need epidemiology data to inform their total addressable market (TAM). Public and private hospitals and clinics can also contribute to registry data and leverage it to drive better outcomes at their facilities.
Africa has a booming health tech sector, attracting $167M in funding/investments in 2023. Of this, the electronic medical records sector received the second highest funding, with almost 20% ($32M) received - Helium Health led the charge with their $30M Series B raise. With the number of EMR companies on the continent, there are use cases and business opportunities to automate the data collection process for cancer, cardiovascular and other chronic disease registries. As these registries can support national chronic disease control programmes such as the 2022-2027 National Cancer Control Plan (NCCP) in Nigeria, there are opportunities for public-private partnerships to address challenges and drive sustainable healthcare development in Sub-Saharan Africa.
While we cannot dispute the availability and potential of registry data across the continent, there are still challenges with data collection and maintenance that need to be addressed. For example, most cancer registries in Nigeria still operate manually, meaning that registrars move from one centre to another to source the data and input them manually into a database. Ideally, registries should leverage electronic medical records (EMR) from hospitals that automatically feed into their database for a more seamless and accurate data collection process. As the use cases of registries are explored, it is important to overcome challenges with data collection and ensure data integrity. This can be achieved by addressing infrastructure and technological gaps and implementing robust data governance and security measures such as patient identity protection guidelines.
Nigeria has recently made strides in addressing these data collection issues with its Digital in Health Initiative. On March 15 2024, the government inaugurated a 20-person implementation committee for this initiative, chaired by Dr. Tunji Alausa, the Minister of State for Health and Social Welfare. One of the critical goals of this initiative is to create a national unified EMR platform that would enhance the efficiency and robustness of data collection across centres. Pilots for the EMR system will begin at the federal tertiary hospitals in one state per geo-political region before being rolled out more broadly.
Key Takeaways from TC Health: In a time when the burden on the African healthcare system is two-fold, chronic diseases can no longer be ignored, and, with mounting macroeconomic challenges, data-driven solutions are crucial - registries are the key to developing these solutions. The public and private sectors should invest more in establishing and maintaining registries and expanding registries to include more endemic chronic diseases such as diabetes and kidney disease.
