The Rwanda National Cancer Registry (RNCR) is a population-based cancer registry (PBCR) established to provide comprehensive data on cancer in Rwanda. The first Population-Based Cancer Registry in Rwanda was established in 1991, covering the former Butare Province (Southern Region) based in Pathology department. Unfortunately, operations ceased during the 1994 Genocide against the Tutsi. In 2010, the registry resumed as a Kigali-Population Based Cancer Registry (KPBCR) supported by international partners and a local NGO. It collapsed again in 2014 due to funding constraints.

In July, 2018, the Rwanda National Cancer Registry (RNCR) was re-established by the Ministry of Health through the Rwanda Biomedical Centre (RBC) with support from partners including NIH (P20 grant), Einstein Rwanda-Research Capacity Building-RD-Rwanda: Research for Development Rwanda, Vital Strategies, IARC and AFCRN. Since its re-establishment, the RNCR has become a government-owned registry to ensure its sustainability.

The RNCR, was then integrated into DHIS2(District Health Information 2), a widely used health data platform. The introduction of the DHIS2 Oncology Tracker in 2019 enabled nationwide cancer surveillance, marking a significant step forward in Rwanda's cancer control efforts.

Currently, the RNCR operates under the Non-Communicable Diseases (NCD) and Cancer Unit within the Rwanda Biomedical Centre (RBC), the Ministry of Health’s implementing agency, based in Kigali, the capital city of Rwanda.

 

Staff

From left to right: Registrar Mr Daniel Sabushimike, Registry coordinator Mrs Lydia Businge, Director Marc Hagenimana, and 73 cancer registry focal persons in healthcare institutions

 

Registry Area

The registry covers the whole Rwanda Population which has an area of 26,338 km2 and the population of 10,515,973 at the census of 2012, and 13,246,394 at that of 2022. 

Fig: Administrative Map of Rwanda

 

Methods of registration and data management

The registry follows standard methods of other PBCRs Data collection methods (data on cases of cancer diagnosed in hospitals, laboratories, death certificates) according to IARC/IACR /WHO standards. From 2007 to 2018, cancer registration was done into Canreg5 and later in customised in DHIS2 Oncology tracker in 2019, the Disease surveillance tool for the ministry of health.

Source of information in RNCR

Collect data on all cancer cases occurring in residents of all five provinces of Rwanda (Kigali City, North, East, South, West) currently in;

• 5 Cancer Diagnostic and Treatment Centers (CHUK, CHUB, KFH, RMH and Butaro)
• 23 Private hospitals, Clinics and Laboratories and
• 45 Provincial, District Hospitals
• Vital statistics office

Data collection is both passive and active:

• Passive: Cancer registry focal persons at health facilities enter data directly into the DHIS2 Oncology Tracker, Rwanda's digital health surveillance tool.
• Active: Central registry staff support facilities in data collection and verification.

For 2007-208 data collected was using paper forms and entered into Canreg5software. However, from 2019 to date data is collected using EMR system to DHIS2 . Cancer diagnoses is coded according to ICD-O-3 version. Data on Yearly basis is then exported from DHIS2 and imported in Canreg5 for further quality checks, cleaning, analysis, reporting and Managment in general by cancer registrars at central level at RBC. he ICD-O codes specifying both tumour site and morphology were converted (by CanReg) to the codes of ICD-10 for analysis. Daily backup is done once done cleaning data and then kept a copy in an external hard disc and on email.

 

CANCER INCIDENCE OVERVIEW

The RNCR provides reliable data on cancer incidence and trends in Rwanda's five provinces: Kigali, North, East, South and West. The data from 2007 to 2023, reveals that, 46, 801 cancer cases were registered with a higher count of cancer cases documented in 2023, totaling 5,548 cases, followed closely by the year 2022 with 5,361 cases. This observation suggests a relatively consistent incidence of cancer cases across the years with slight drop down incidence in 2020 due COVID-19 Pandemic.

Fig: Number of cases by year (2007-2023)

 

GENDER AND AGE DISTRIBUTION

Of the 46, 801 cases recorded between 2007 and 2023, 18,905 cases were reported in males and 27,896 in females. The most affected age group across genders was 50-69 years, comprising 37.34% of male cases and 39.4% of female cases.

 

TOP TEN CANCERS BETWEEN 2007 AND 2023

Figure below shows that among the recorded cancer cases in the period between 2007 to 2022, prostate cancer was the most recorded among males (3,484), followed by stomach cancer (1,901), while Breast cancer was the most recorded among females (5,812), followed by breast cancer (5,809).

 

PUBLICATIONS

Below are the publications that made possible due to Rwanda National Cancer Registry

• https://onlinelibrary.wiley.com/doi/full/10.1002/cam4.70423
• https://wiley.com/doi/abs/10.1002/pbc.31020
• https://wiley.com/doi/abs/10.1002/ijc.34969
• https://onlinelibrary.wiley.com/doi/full/10.1002/ijc.35091
• https://org/cebp/article/30/7_Supplement/86/670941/Abstract-86-Cancer-Update-in-Rwanda-2009-2018
• https://lww.com/aidsonline/abstract/2023/01010/cancer_in_patients_with_and_without_hiv_infection.9.aspx.

 

CHALLENGES

• Limited Staffing at Central Level impacts operational efficiency and data oversight.
• Competing Priorities at Health Facilities with focal persons facing competing demands from other responsibilities, limiting their availability for registry-related tasks.
• Lack of System Interoperability: the lack of interoperability between DHIS2 and facility-level EMR systems necessitates duplicate data entry, increasing workload and the risk of errors.
• Insufficient Funding: Limited budget allocation affects registry operations, staffing, and the ability to conduct research activities essential for cancer control.
• Incomplete Data Coverage at Some facilities
• Internet Connectivity Dependence: The DHIS2 system requires consistent and reliable internet connectivity, which is a challenge in some regions.

VISION FOR THE FUTURE

The RNCR is committed to improving the completeness and quality of cancer data through

• Virtual training and mentorship for focal persons
• Integration of EMR systems with DHIS2 for seamless data entry.
• Linkage of Cancer registry data with Other data sources like HIV, CRVS and Screening datasets
• Regular supervision and data quality checks.
• Grants Application and advocating for increased funding and resources for cancer research and registry activities.
• RNCR the DHIS2 Oncology Module Training Canter

In conclusion, the Rwanda National Cancer Registry has made significant progress in capturing comprehensive cancer data despite historical interruptions. The registry’s adherence to international standards and its integration into government systems ensure reliable and sustainable cancer surveillance. Continued investment in resources, training, and technology will further enhance the quality and completeness of cancer data, supporting evidence-based strategies for cancer control in Rwanda.

 

Contact:

1.Mr.Marc Hagenimana 
Email:marc.hagenimana(at)rbc.gov.rw

 2.Lydia Businge
Email:lydia.businge(at)rbc.gov.rw

Registry Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
Web site: www.rbc.gov.rw

 

Updated 26th November 2024