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1 ri Nig e f mo te ational S N ys an Newsletter of the Nigerian National System of Cancer Registries (NSCR) Edition
2 NSCR in Brief The NSCR was conceived in 2009, as a collaborative effort between the Institute of Human Virology Nigeria (IHVN), Federal Ministry of Health (FMOH), and cancer registries of federal health institutions in Nigeria. The main objective of this program is to provide data from Nigerian cancer registries on the most common cancers, cancer incidence and cancer mortality statistics. This objective is being achieved through collaboration and support from local and international partners such as the International Agency for Research on Cancer (IARC), International Prevention Research Institute (ipri) and Society of Oncology and Cancer Research of Nigeria (SOCRON) and the African Cancer Registry Network (AFCRN). In this issue: Report of West African Health Organization (WAHO) cancer registration meeting Feature article NSCR and research collaborations NSCR news Acknowledgement Closing remarks Edited by: Dr. Elima Jedy-Agba, Dr. Emmanuel Oga and Dr. Michael Odutola Designed by: Akinkunle Oyafajo Project PI: Dr. Clement Adebamowo MD, ScD Project Administrator: Yinka Owoade
3 Report of West African Health Organization (WAHO) Cancer Registration Meeting The WAHO in collaboration with the WHO Regional Office for Africa (WHO AFRO), organized a high level meeting to review cancer registration in the West African sub-region. The meeting took place between 27th and 28th June, 2013 at Accra, Ghana. The program was organized with the following objectives: 1. To share the existing data on the magnitude, trends in cancers and associated risk factors in West Africa 2. To advocate for recognition and inclusion of cancer registration into national health information system 3. To assess the operations, strengths and weaknesses of cancer registration programmes in West Africa with respect to data management, dissemination and use for clinical and policy-decisions 4. To identify the best practices, opportunities and enablers in well functioning cancer registration 5. To explore the opportunities for networking among the cancer control programmes in West Africa Dr Emmanuel Oga (NSCR) giving a speech at the WHAO cancer registration meeting 2013 Nigerian All Right Reserved Page 3
4 Report of West African Health Organization (WAHO) Cancer Registration Meeting The meeting was declared opened by Mr Peter Arhin, the Director of Traditional Medicine Directorate of Ghana, Ministry of Health who represented the Hon. Minister of Health. He commended WAHO for organizing the meeting to stimulate interest and provide support to cancer registration. There were 21 participants, 3 facilitators, 3 interpreters/technician and 2 administrative staff involved in the review meeting. The participants came from all the ECOWAS Member States except The Gambia. The 2 representatives from Nigeria were: Dr Inem Usoroh (Director of Non Communicable Disease Unit of the Nigeria Federal Ministry of Health and Dr Emmanuel Oga (NSCR). Experts from WAHO, WHO AFRO, and the African Cancer Registry Network (AFCRN) served as resource persons for the meeting. Methods comprised lectures, case studies and plenary discussions. Dr Emmanuel Oga of NSCR gave a talk on monitoring and evaluation of cancer registration in Nigeria. At the end of the meeting the following outcomes were obtained: 1. Updated knowledge on the magnitude of cancers in West Africa 2. Advocacy made for cancer registration into NHIS 3. A situation analysis report on the types, strengths, best practices and weaknesses of cancer registration systems known 4. Recommendations to improve the performance of existing cancer registration systems and lessons learnt shared with countries intending to start or expand cancer registration 5. Improved network and communication between WAHO, WHO, cancer control programmes and cancer registration managers Nigerian All Right Reserved Page 4
5 A cross section of participants from ECOWAS Member States at the meeting 2013 Nigerian All Right Reserved Page 5
6 Feature Article Mrs Okoroafor Ann is the registrar of Enugu Cancer Registry which is domiciled in the Oncology Centre of University of Nigeria Teaching Hospital Enugu. She graduated from Our Lady of Lourdes School of Nursing and Midwifery, Anambra as a registered nurse and midwife. Drawn from her genuine interest in area of cancer she was deployed to the cancer registry as the registrar in 2009, where she works under the supervision of Prof Ezeome who is the cancer registry director. She has attended both local and international trainings on Cancer Registration: Workshop on Cancer Registration and Epidemiology from 7th - 9th April, 2009 at the Institute of Human Virology Nigeria. Workshop on Cancer Registration and CanReg4 Software Implementation from 14th -16th December 2009, at Institute of Human Virology Nigeria, Abuja. Workshop on Cancer Registration and Epidemiology (Quality Control in Cancer Registries) from 21st - 23rd February, 2011 at Institute of Human Virology Nigeria, Abuja. Advanced Training Course on Cancer Registration Methods organized by African Cancer Registry Network (AFCRN) from November 19th- 24th 2012, at Institute of Human Virology Nigeria, Abuja. Recommended by NSCR attend a course on Cancer Registration: Principles and Methods, from 17th - 21st June 2013, at Lyon, in France as part of the IARC Summer School on Cancer Epidemiology. The IARC Summer School on Cancer Registration that I was priviledged to attend opened my eye to the importance of cancer registration and my knowledge on the principles of cancer registration has been broadened. Mrs Okoroafor Ann Nigerian All Right Reserved Page 6
7 Feature Article Contd. Cross-section of participants at the IARC Summer School on Cancer Epidemiology,2013. From Right to-left: Mrs Okoroafor Ann (3rd right) Extreme right (front):mrs Okoroafor Ann at IARC Summer School on Cancer Epidemiology, Nigerian All Right Reserved Page 7
8 NSCR and research collaborations A. Mapping Cancer registries in Nigeria using Geographic Information System (GIS study) In collaboration with Benjamin Al-Haddad of University of Minnesota. Paper 1- Title: Age heaping and Cancer Rate estimation in Nigeria Submitted to: Demography Journal Key Findings: We found lower levels of age heaping among females than males both in Nigerian cancer registries and in the general population. Although age heaping occurs at both national level and within cancer registries in Nigeria, the Age Standardized Incidence rates calculated using population data are not significantly affected by moderate to severe age heaping. Paper 2- Title: Comparability and Diagnostic Validity of Nigerian Cancer Registries Submitted to: International Journal of Cancer Key Findings: Nigerian cancer registries appeared to be relatively comparable to each other and to international standards. Most registries use CanReg4 software, IARC/IACR rules for multiple primaries and had high rates of morphological verification for the most common cancers including the breast, cervix and prostate. Paper 3- Title: Mapping Completeness of Nigerian Cancer Registries Submitted to: BMC Cancer Journal Key Findings: We compare Nigerian cancer registries to each other to examine relative completeness for certain cancers. For childhood cancers, we find evidence of incompleteness and suggestive evidence of referral bias in some registries. There is also evidence of general incompleteness which may be due to inability to diagnose specific cancers and poor case finding. More rigorous case finding methods and allocation of resources to the cancer registries for improved case finding are needed. B. Cancer Burden among HIV Positive Persons in Nigeria: Preliminary Findings from the Nigerian AIDS -Cancer Match Study. A collaboration with Division of Cancer Epidemiology and Genetics, National Cancer Institute, Bethesda, Maryland and Biostatistics Unit, Aviano Cancer Center, IRCCS, Aviano, Italy Nigerian All Right Reserved Page 8
9 NSCR and research collaborations contd. Submitted to: Infectious Agents and Cancer Journal Key findings: We matched cancer cases from Abuja Cancer Registry between with a cohort of 18,965 HIV positive persons registered between 2005 and 2012 at health facilities where the Institute of Human Virology Nigeria (IHVN) provides HIV prevention and treatment services. 2,029 clients with invasive cancer were registered at the registry and among the PLWA, 39 cancer cases were identified. The Standardized Incidence Rate (95% CI) for the Aids Defining Cancers were 5.7 (4.1, 7.2) and 2.0 (0.4, 3.5), for Kaposi Sarcoma (KS) and Cervical Cancer (CC) respectively. Consistent with the findings from other studies, the risk of KS but not CC or Non- Hodgkin Lymphoma, was significantly increased among HIV positive persons, compared to the general population. C. International Epidemiological Database to evaluate AIDS (IeDEA): This is a NIH funded multiregional project in Sub-Saharan Africa. This collaborative project aims to determine the prevalence of HIV in patients with cancer in referral hospitals in Nigeria and also to determine Survival among HIV infected individuals with Kaposi Sarcoma in the era of ART in Nigeria Nigerian All Right Reserved Page 9
10 NSCR News There are plans to start a Population Based Cancer Registry in Sokoto and Enugu state in order to improve national coverage of cancer registration in Nigeria. 3 PBCRs (Abuja, Calabar and Ibadan cancer registries) submitted data for GLOBOCAN The World Cancer Leaders' Summit held in Cape Town on 18-19th. The International Association of Cancer Registries (IACR) held its 35th meeting in Buenos Aires, Argentina, from 22 to 24 October The Calabar Cancer registry and the Abuja Cancer registry submitted abstracts for this meeting and all 3 abstracts were accepted Nigerian All Right Reserved Page 10
11 ACKNOWLEDGEMENT The Nigerian is a collaboration between the Federal Ministry of Health of Nigeria; IHVN; Greenebaum Cancer Center, Institute of Human Virology and Department of Epidemiology and Public Health of the University of Maryland Baltimore. The activities of the Nigerian are partly funded by IHVN-UM Capacity Development for Research into AIDS Associated Malignancies Grant. (NIH/NCI D43CA ) CLOSING REMARKS There is every reason to be excited about the prospects of cancer registration in Nigeria. Government recognition of the significance of this activity, the availability of already trained registry heads and registrars; and the cancer data coming out of the registries give cause for optimism. Sustained effort and innovative problem solving at all levels will be required for this exciting prospect to be translated into continued success on the ground. Data from Nigeria needs to make a re-entry into Cancer Incidence in Five Continents (CI5); this is a WHO publication of cancer statistics from the world over. To achieve this, close monitoring of indices of data quality in Cancer Registration must be sustained. Please send contributions and suggestions to imanueloga@gmail.com CHECK US ON THE WEB: CONTACT INFORMATION: Institute of Human Virology, Nigeria Pent House, Maina Court, Plot 252, Herbert Macaulay Way Central Business District P.O. Box 9396, Garki, Abuja. NIGERIA. Tel: +234 (097) info@ihvnigeria.org 2013 Nigerian All Right Reserved Page 11
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