The Kenya National Cancer Registry
The Cancer Registry at KEMRI began in 2001 as a project funded by the US National Cancer Institute, focusing on the population of Nairobi province (now Nairobi County). This was after consultations with key stakeholders including Ministry of Health, World Health Organisation (WHO) and key treatment facilities. In 2012 it was established as a unit within the Centre for Clinical Research (CCR) and more staffing were hired and deployed to the unit.
In 2016 through a grant from the Kenya Government (National Treasury) and the US National Cancer Institute (https://www.cancer.gov/) the registry was expanded to cover more counties and a central repository, the Kenya Cancer Registry, was established to pool the population-based data.
The KEMRI Cancer Registry is thus an integrated national Population-Based Cancer Registry (PBCR) that aims to provide high quality cancer surveillance data including incidence, mortality, survival, to support scientific research and inform cancer control initiatives in the country. The following counties signed MoU’s with KEMRI to develop population-based registries and be part of the KEMRI program: Nairobi, Uasin Gishu (Eldoret), Kisumu, Meru, Embu, Mombasa, Garissa, Nakuru, Kitui, Kakamega, Machakos and Kiambu (see map). The Nairobi and Eldoret registries are founding members of the East Africa Cancer Registry Network that was expanded to be the Africa Cancer Registry Network (AFCRN) (http://afcrn.org/) in 2012.
The two registries have continuously participated in AFCRN activities including joint research with other sub-Saharan African countries, trainings, technical support among others. The two registries are also members of the International Association of Cancer Registries (IACR) (http://www.iacr.com.fr/) and have met the quality standards for PBCRs as per the International Agency for Research on Cancer (IARC) (https://www.iarc.fr/) and IACR’s guidelines. The data is thus utilized to generate estimates for Kenya published in IARC’s GlOBOCAN (http://gco.iarc.fr/) series. Data from Nairobi registry was included in volume XI of the prestigious
IARC/IACR’s publication, Cancer Incidence in Five Continents (CI5) (http://ci5.iarc.fr/Default.aspx).
“Our goal is to continuously avail high quality data from the region and utilize these data to expand research activities and promote interventions on prevention, early diagnosis and management”, says Anne Korir, the Head of the KEMRI Cancer Registry Program.
Quality Data for Research and Better Health
To be an internationally recognized Centre of Excellence committed to Advancing Cancer Research for Better Health
- Establish the Kenya National Cancer Registry program which will collate and compile National data on cancer in Kenya
- Establish and maintain a centralized data centre that assist collate cancer data in Kenya
- Develop and implement trainings of heath personnel on cancer registration in the selected counties and hospitals interested in setting hospital based cancer registries in Kenya
- Establish additional cancer registries in selected counties and hospitals in Kenya
- Develop and implement a cancer registry awareness programme for clinical and hospital staff
- Collect, collate, analyze and interpret data on cancer (incidence, mortality, survival).
- Monitor and evaluate cancer registry activities in Kenya
- Develop proposals and source for research funds for cancer registration and data analysis.
- Conduct studies in epidemiological, trends and incidences for cancer.
- Inform policy and provide national trends in cancer
- Disseminate research findings to stakeholders through local and international forums and prepare publications to various journals.
- Forge partnerships with both international and national research collaborators.
- Establish other disease specific registries in the country in order to have baseline epidemiologic data
- Participate in Non-Communicable Diseases Research, advocacy, capacity building and Knowledge sharing and establish networks with other stakeholders.
Cancer (and Tobacco Control) Training and Research Across the Lifespan in Kenya (D43 TW009333). Funded by Forgaty; National Institute of Health. The grant awarded to Kenya through a sub-award from Dr. Scott Remick of West Virginia University covered three major aims with KEMRI responsible for one aim as follows:
- Strengthen and expand capacity at KEMRI for cancer and other NCD registration:
- Train additional staff for both cancer and other NCD registration – piloting a stroke registry (first time ever done)
- Build capacity for both cancer and other NCD registration given successful partnership with WVUH Tumor Registry
- Explore EMR system for NCD registration that can serve as a model for sub-Saharan Africa
- Build capacity in Nairobi, Eldoret and Kisumu to expand reach of NCR to provide more meaningful epidemiological data for national reporting and frame healthcare policy, and drive research agendas
PRODUCTS AND SERVICES OFFERED
- Trainings: We offer basic and advanced courses on cancer surveillance, data management and reporting. Calendar for next year’s courses will be posted on this site.
- Technical support: We offer technical support by arranging a site visit to address any challenges with canreg5 or data analysis.
- Mentorship: We host trainees from Kenya and Africa region for mentorship programs at our registry.
- Internships: We offer opportunities for interns who have an interest in surveillance and epidemiological research.
- Data: We welcome partnerships and collaborations for research. We have an experienced team of registrars who are versed with the health system in Kenya. Our data has been presented in several formats. National estimates for Kenya is accessed at http://gco.iarc.fr/today/data/factsheets/populations/404-kenya-fact-sheets.pdf
The role of the National Cancer Registry at KEMRI in Universal Health Coverage
Cancer remains a major public health problem globally and it is predicted that more than 20 million new cases will occur worldwide by 2025 with 80% of the burden occurring in low- and middle- income countries.
Cancer surveillance is the ongoing, timely, and systematic collection and analysis of information on cancer risk factors (such as lifestyle factors, behavioral influences, genetic predispositions, or environmental exposures). It identifying new cancer cases, cancer deaths, the extent of disease at diagnosis, treatment, clinical management, and survival.
Cancer registration is an important component of cancer surveillance. Cancer registration is the fundamental method by which information is systematically collected about the occurrence of cancer (incidence), about the types of cancer that occur (histology, morphology, and behavior), the anatomic location (topography), the extent of disease at the time of diagnosis (stage), the kinds of treatment received by cancer patients, and the outcomes of treatment and clinical management (mortality and survival).
KEMRI established a population-based registry in 2001 covering one geographical region – Nairobi County then referred to as Nairobi province.
In 2016, KEMRI launched the national cancer registry to collate cancer data and establish the incidence, mortality and survival rates in various counties in Kenya.
Uses of Cancer registry data
- Cancer registry is used as a tool for epidemiological research
- Registry data enables us to establish the disease burden, geographic distribution and the patient care pathways
- It can also help us identify and track the impact of different clinical, systemic and policy initiatives and measures to improve cancer care.
Utility of cancer registry data for research:
- Cohorts of specific cancers or grouping
- Risk factors including environmental exposures
- Patterns of care : Time lags between diagnosis and treatment
- Undertake outcome of care studies: enables us to study patient outcomes, patients treatment choices which helps us identify and address gaps and problems in cancer care, therefore data is critical to improving cancer care
- Occurrence of cancer in specific groups (childhood cancers, Head and Neck, Gastrointestinal, HIV-associated malignancies etc).
- Use the Geographic Information systems (GIS) mapping to establish possible cancer clusters that may provide information on cancer risk factors.
- Survival studies: Conduct Follow-up studies to understand survival of different cancer types, looking at diagnostics, access to treatment, geographical distances etc
- Generate research hypothesis and conduct epidemiologic and clinical research using cancer registry data to contribute to scientific knowledge regarding cancer in Kenya. Some of the linkages to be set up for research include:
- Linkage of the cancer registry to the comprehensive care clinics or existing HIV databases and study the occurrence of cancer amongst people living with HIV/AIDS.
- Linkage to NHIF system for completeness of registry data and to undertake studies on utility and impact of NHIF on access to care
- Linkage to existing DHIS database to ensure more comprehensive and complete data for patients
- Linking with HDSS (Health Demographic Surveillance Systems) data to study variations in relation to social and environmental factors;
- Linkage to Civil registration of deaths for vital status to describe mortality
The national cancer registry at KEMRI however needs to be strengthened with adequate resources including personnel. A robust registry could enable different types of questions to be answered and the data can be utilized by researchers and other stakeholders. For example:
- How big is the cancer burden in the country and how is cancer distributed across different regions?
- What are the outcomes of the diagnostic and treatment initiatives already in place in the country?
- How efficient are the screening initiatives implemented in the communities in terms of final diagnostic, treatment and outcomes/survival for the patients?
- Is pharmacogenomics in African populations being assessed?
- Why do certain products show lower efficacy in the Kenyan population/ certain Kenyan populations vs. what is observed in international clinical trials?
- What is the underlying biomarker makeup of the Kenyan population affected with key types of tumors – and how could these impact therapy guidelines in the country?
- Are there enough patients matching specific inclusion criteria to launch a local clinical trial?
- Korir A, Okerosi N, Ronoh V, Mutuma G, Parkin M. Incidence of cancer in Nairobi, Kenya (2004-2008). Int J Cancer. 2015 Nov 1;137(9):2053-9. doi:10.1002/ijc.29674. PubMed PMID: 26139540.
- Korir A, Yu Wang E, Sasieni P, Okerosi N, Ronoh V, Maxwell Parkin D. Cancer risks in Nairobi (2000-2014) by ethnic group. Int J Cancer. 2017 Feb 15;140(4):788-797. doi: 10.1002/ijc.30502. Epub 2016 Nov 27. PubMed PMID: 27813082.
- Korir A, Mauti N, Moats P, Gurka MJ, Mutuma G, Metheny C, Mwamba PM, Oyiro PO, Fisher M, Ayers LW, Rochford R, Mwanda WO, Remick SC. Developing clinical strength-of-evidence approach to define HIV-associated malignancies for cancer registration in Kenya. PLoS One. 2014 Jan 23;9(1):e85881. doi: 10.1371/journal.pone.0085881. eCollection 2014. PubMed PMID: 24465764; PubMed Central PMCID: PMC3900436.
- Korir A, Gakunga R, Subramanian S, Okerosi N, Chesumbai G, Edwards P, Tangka F, Joseph R, Buziba N, Rono V, Parkin DM, Saraiya M. Economic analysis of the Nairobi Cancer Registry: Implications for expanding and enhancing cancer registration in Kenya. Cancer Epidemiol. 2016 Dec;45 Suppl 1:S20-S29. doi: 10.1016/j.canep.2016.11.006. Epub 2016 Nov 30. PubMed PMID: 27915004; PubMed Central PMCID: PMC5840871.
- Gakunga R, Korir A, Oduor JO, Muniu E, Njeru M and Kaduka L. Exploring integration of education and screening for cancer and other non-communicable diseases into HIV testing and counseling services in Nairobi, Kenya: Results from a Swot Analysis. Submitted to AORTIC conference 2015, Marrakech, Morocco from 18-22 November 2015.
- Gakunga R, Kinyanjui A, Ali Z, Ochieng’ E, Gikaara N, Maluni F, Wata D, Kyeng’ M, Korir A, Subramanian S. Identifying Barriers and Facilitators to Breast Cancer. Early Detection and Subsequent Treatment Engagement in Kenya: A Qualitative. Approach. Oncologist. 2019 Oct 10. pii: theoncologist.2019-0257. doi: 10.1634/theoncologist.2019-0257. [Epub ahead of print] PubMed PMID: 31601730.
- Subramanian S, Gakunga R, Jones MD, Kinyanjui A, Ochieng’ E, Gikaara N, Maluni F, Wata D, Korir A, Mutebi M, Ali Z. Establishing Cohorts to Generate the Evidence Base to Reduce the Burden of Breast Cancer in Sub-Saharan Africa: Results From a Feasibility Study in Kenya. J Glob Oncol. 2019 Mar;5:1-10. doi: 10.1200/JGO.18.00225. PubMed PMID: 30908145; PubMed Central PMCID: PMC6449073.
- 20th -24, August 2012, Basic Cancer registration course in KEMRI and practical course on case abstraction in various hospitals within Nairobi. Participants from Ethiopia, Uganda, Zimbabwe Tanzania, Kenya and Malawi, Funded by AFCRN.
- 3rd-14th February 2014, Basic Cancer registration course in KEMRI and mentorship program for Kisumu cancer registry staff funded by D43 HIV malignancy study.
- 21st -26th April 2014, Basic Cancer registration course to new cancer registry staff in Nairobi population based cancer registry (NPBCR). Sponsored by NPBCR
- 21st of January 2015, one-day training for the stroke study research assistants and KNH facility staff, carried out at the Centre for Public Health Research-KEMRI, sponsored by stroke study D43 grant- USA
- 24th Aug–1st Sept 2015, Basic course on cancer registration, conducted in KEMRI. participants from Kenya, Zimbabwe and Malawi Sponsored by Union of International Cancer Control (UICC) KEMRI and AFCRN with
- 25th Feb-3rd Mar 2019, Basic course in cancer registration; setting up Bujumbura population Cancer Registry. Participants from Non –Communicable diseases MoH Burundi. Sponsored by Eastern Central and Southern Africa Health Community (ECSA-HC)
- 20th -23rd May 2019, Cancer registration and sensitization activity in Kitui County, participants from all sub counties. sponsored by Catholic Medical Mission Board (CMMB)
- 6th -17th May 2019, KNCR-KEMRI conducted advanced course in cancer registration in Nairobi –funded by different counties in Kenya.
- 18th -22nd February cancer registry staff trained together with the ministry of Health-Kenya, participants from various counties in Kenya. Sponsored by the East, Central and Southern African (ECSA) Health Community.
7th -11th October 2019 Mentorship program for BPBCR offered by Nathan KEMRI. Sponsored by the East, Central and Southern African (ECSA) Health Community
Ms. Anne Rugutt Korir
Korir A, Okerosi N, Ronoh V, Mutuma G, Parkin M. Incidence of cancer in Nairobi, Kenya (2004-2008). Int J Cancer. 2015 Nov 1;137(9):2053-9. doi:10.1002/ijc.29674. PubMed PMID: 26139540.
Korir A, Yu Wang E, Sasieni P, Okerosi N, Ronoh V, Maxwell Parkin D. Cancer risks in Nairobi (2000-2014) by ethnic group. Int J Cancer. 2017 Feb 15;140(4):788-797. doi: 10.1002/ijc.30502. Epub 2016 Nov 27. PubMed PMID: 27813082.
Korir A, Mauti N, Moats P, Gurka MJ, Mutuma G, Metheny C, Mwamba PM, Oyiro PO, Fisher M, Ayers LW, Rochford R, Mwanda WO, Remick SC. Developing clinical strength-of-evidence approach to define HIV-associated malignancies for cancer registration in Kenya. PLoS One. 2014 Jan 23;9(1):e85881. doi: 10.1371/journal.pone.0085881. eCollection 2014. PubMed PMID: 24465764; PubMed Central PMCID: PMC3900436.
Korir A, Gakunga R, Subramanian S, Okerosi N, Chesumbai G, Edwards P, Tangka F, Joseph R, Buziba N, Rono V, Parkin DM, Saraiya M. Economic analysis of the Nairobi Cancer Registry: Implications for expanding and enhancing cancer registration in Kenya. Cancer Epidemiol. 2016 Dec;45 Suppl 1:S20-S29. doi: 10.1016/j.canep.2016.11.006. Epub 2016 Nov 30. PubMed PMID: 27915004; PubMed Central PMCID: PMC5840871.
Mary Nyanchama Abere
Health Records and Information Technician /Cancer Registrar
Assistant Research Officer
He is actively involved in the development and upgrading of training materials, standard operating procedures, case abstraction tools, monitoring and evaluation tools, strategic documents and provides input in the development of funding proposals and research activities
Kenya National Cancer Registry
Population and Surveillance Division,
Centre for Clinical Research
Kenya Medical Research Institute headquarters Nairobi.
Off Mbagathi way