INCTR Cancer Registry Report 2016

Program: Cancer Registries
Coordinators: Donald Maxwell Parkin
Other INCTR Participants:
Collaborators: 1. IARC. The official partnership between AFCRN and IARC continues. AFCRN provides the facilities and features of a “Regional Hub” for sub-Saharan Africa, as part of the Global initiative for Cancer Registration (GICR). The capacity of AFCRN to undertake this work is supported through funds received via a contract (APW - Agreement for Performance of Work). This included funds provided by The GAVI Alliance (the “Global Alliance for Vaccines and Immunisation”) and a contribution from CDC to IARC.
Dr Parkin has been given the status of an IARC “Senior Visiting Scientist”.

2. American Cancer Society (ACS). Following the AFCRN database update, the preparation of monograph ‘Cancer in Africa’, in collaboration with IARC, funded by ACS is In-Press.

3. AFCRN Database. As agreed at the ARM in Brazzaville (Feb 2016), a new data submission, comprising a listing of case records (anonymous) from each AFCRN member, was requested. The database is hosted by IARC under a Research Agreement. Contributing to the database is a criteria for membership of AFCRN and all members did so. Access for research studies (including by IARC researchers) is via request to the AFCRN Research Committee.

4. Treatment and Follow-up Study. Dr Eva Kantelhardt is running a research study Comparing therapy and outcome in cancer patients of low and middle resource settings using population-based registries in 5 centres (Eldoret, Bamako, Uganda, Bulawayo and Addis Ababa).

5. Make Cancer a Reportable Disease In collaboration with IARC and WHO AFRO, AFCRN took initiative and searched the existing legislation and regulations from African countries, as well as from other parts of the world to try to draft a model regulation that could be recommended to member states by WHO.
So far, the only regulation we could gather within the African Continent was the one from RSA. During the UICC WCC, we have learnt that the Mr Jonathan Liberman from the Cancer Council and the McCabe Centre for Law and Cancer, Australia has been working with other groups in tackling challenges from the legal system relating to cancer health care issue around the world. We have made contact with him and he has promised to help in early 2017.

The Network is financially supported by the UK registered charity The INCTR Challenge Fund (charity number 1079181) which receives restricted funds to support cancer registration programme in Africa. In 2016, majority funding for activities is from IARC. Through collaborations, some activities are also being supported by International Atomic Energy Agency (IAEA), Union for International Cancer Control (UICC), ROCHE, the American Cancer Society (ACS), the University of Halle and South Africa Medical Research Council. The AFCRN coordinating centre is fundraising for 2017-2018.
Branch(es): INCTR Challenge Fund
Location: Single Continent
Country(s): AFRICA
Institutions: MEMBERSHIP
To date, the Network was supporting and/or assisting the development of 31 cancer registries in 22 sub Saharan Africa countries, including English, French and Portuguese speaking countries. A list of current members is shown below.

List of Members

1. Benin
Benin Cancer Registry (Cotonou)
2. Botswana
Botswana National Cancer Registry
3. Congo (Republic of):
Registre des cancers de Brazzaville
4. Cote d’Ivoire
Registre des Cancer d’Abidjan
5. Ethiopia:
Addis Ababa City Cancer Registry
6. Gambia:
Gambia National Cancer Registry
7. Ghana:
Kumasi Cancer Registry
8. Guinea:
Registre de Cancer de Guinea
9. Kenya:
Eldoret Cancer Registry
Nairobi Cancer Registry
10. Malawi:
Malawi Cancer Registry
11. Mali:
Registre des Cancers du Mali
12. Mauritius:
Mauritius Cancer Registry
13. Mozambique:
Beira Cancer Registry
Maputo Cancer Registry
14. Namibia:
Namibian National Cancer Registry
15. Niger:
Registre des cancers du Niger
16. Nigeria:
Abuja Cancer Registry
Calabar Cancer Registry
Ibadan Cancer Registry
Nigerian National System of Cancer Registries (NNSCR)
17. Reunion:
Reunion National Cancer Registry
18. Seychelles:
Seychelles National Cancer Registry
19. South Africa:
Eastern Cape Province Cancer Registry
South African Children's Cancer Group (SACCSG) Tumour Registry
South African National Cancer Registry
20. Uganda:
Gulu Cancer Registry
Kampala Cancer Registry
21. Zambia:
Zambian Cancer Registry
22. Zimbabwe:
Zimbabwe National Cancer Registry
(Harare Cancer Registry, Bulawayo Cancer Registry)
Background Information: The African Cancer Registry Network (AFCRN) is a project of the Cancer Registry Programme of the International Network for Cancer Treatment and Research (INCTR). It is supported financially through The (INCTR) Challenge Fund, a registered UK charity (charity number 1079181) that raises funds for INCTR projects. The Challenge Fund in turn receives donations designated to support cancer registry activities in low and middle income countries.

The African Cancer Registry Network (AFCRN) was formally inaugurated on 1st March, 2012, and succeeded and expanded the activities of the East African Cancer Registry Network (EARN), which had been established in January 2011, thanks to a grant from the Doris Duke Charitable Foundation (USA).

2016 is the fifth year of the work of the African Cancer Registry Network (AFCRN). AFCRN remains in official partnership with the International Agency for Research on Cancer (IARC); as part of the “Global Initiative for Cancer Registry Development in Low- and Middle-Income Countries”, the Network acts as a consortium to provide a “Regional Hub” services for cancer registries in Sub Saharan Africa (SSA).

The secretariat of AFCRN is based in Oxford, UK (address above) with Dr Max Parkin ( as coordinator and Mrs Biying Liu ( as administrator. Activities in Africa are assisted by a group of skilled consultants. Confidentiality of data and the interests of those involved in the data collection and processing are safeguarded by a Research Committee.

The African Cancer Registry Network is one activity of the cancer registration programme of the International Network for Cancer Treatment and Research (INCTR). INCTR is a not-for-profit organization dedicated to helping build capacity for cancer research and treatment in developing countries.
Objectives: AFCRN aims to improve the effectiveness of cancer surveillance in sub Saharan Africa by providing expert evaluation of current problems and technical support to remedy identified barriers, with long-term goals of strengthening health systems and creating research platforms for the identification of problems, priorities, and targets for intervention. Support to AFCRN is a recognition of the increasing burden of non-communicable diseases, and especially cancer, in the continent, and the need for adequate surveillance as a fundamental part of any rational programme for cancer control.
By Dr Max Parkin
18th February, Dr Parkin, accompanied by Mrs Biying Liu, visited the Brazzaville Cancer Registry. This was a follow up visit. Aim was to review the status of the registry and to meet with the newly appointed supervisor of the registry (Pr JF Peko).
20-22nd April, Dr Parkin, accompanied by Mrs Gladys Chesumbai from Eldoret Cancer Registry, visited the cancer registry in Mwanza, Tanzania. The purpose of the visit was to review the feasibility of developing a PBCR, based on the work already done in BMC. The general impression was that the situation has been improving. Based on that AFCRN negotiated some financial support from the INCTR Burkitt Lymphoma Treatment Project and provided 8.5 months’ salary to the registrar Mr. Franco Afyusisye (expiring on 31 December 2016). He attended the October training in Kampala. By the end of 2016, the registry must submit their full data for evaluation.

23-24th April, Dr Parkin and Mrs Chesumbai visited the cancer registry in Kilimanjaro Christian Medical Centre. The findings were encouraging but the consultants were not able to assess the quality of the data due to the condition of the data sets (3 separate data sets). It was then suggested that the registry, with help from Gladys, reorganise their data base in CanReg5. Dr Michael Orest attended the October CanReg 5 training in Kampala.
Ms Chesumbai had helped merged two sets of data during the workshop. But it wasn’t possible to open the 3rd set. Dr Orest promised to send that data after his return.

23-24th May, Dr Parkin visited the Beira Cancer Registry. The conclusion was that since the previous visits/training provided by Dr Goncalo, the work performance of the registrar had improved. But there was still an urgent need for further training in CanReg5. There were errors in the database, the registrar should put in more effort in improving the data quality i.e. to purge duplicates.

25-27th May, Dr Parkin visited the Maputo Cancer Registry. The registry has made considerable progress since last visit (11 months earlier), so that, despite case finding methods that were still evolving, and incomplete data entry, the calculated incidence rates for 2015 were reasonable. As a result, the registry has become the 31st member of the Network. The registry was advised to improve the data collection form and explore additional sources of data. A registrar attended the Oct Kampala CanReg5 training course.

31May – 2 June, Dr Parkin visited the Zambia National Cancer Registry, as part of the collaboration with UICC and the Zambian Government for the development of the cancer control planning. The conclusion of the visit was that the registry has made progress in population-based registration for Lusaka district. However, the registration level was still not as complete as it might have been, possibly due to low staffing levels while having to record the data from the entire country. A new evaluation will be made when the 2014 registration is completed.

13 Oct, Dr Parkin visited the Kampala Cancer Registry. The objective was to learn about the planning for the registry after the foreseeable retirement of the current registry Director.

Zimbabwe National Cancer Registry
Under the leadership of Eric Chokunonga, the Zimbabwe National Cancer Registry provided in-house training to other registries. This year, the ZNCR hosted the team from the Zambia National Cancer Registry (20-22 April) and the Swaziland National Cancer Registry (4-6 April). In house training includes presentation on the Zimbabwe NCR, lectures on basic principles of cancer registry methods, observation of daily work activities, hospital visits, high level discussion about the planning and support for a national cancer registry. The experience was highly appreciated by the two teams.

Annual Review Meeting (ARM) 2106
The meeting was held in Brazzaville, Republic of Congo. Hosted by the Registre de Cancer de Brazzaville. 40 representatives from member registries as well as significant individuals from other cancer control organisations and non member registries attended the 3 day ARM (15-17th February 2016). The meeting included presentations, discussions and lectures. The ARM had two components:
1. A general meeting of AFCRN members to review activities in 2015, agree common policies and membership rules, and plan activities for 2016.
2. Presentations from:
a. selected AFCRN members, on
i. problems/solutions and innovative work in registration,
ii. research activities,
iii. local and international collaborations
b. members of the steering committee, on
i. Activities in other regional Hubs relevant to the African consortium (AFCRN)
ii. Central GICR activity – advocacy, fund raising
iii. IACR – activities relevant to African members
c. Observers and research partners, on
i. Ongoing and new research projects
Minutes were circulated to participants, and copies are available on request.

The IAEA/IARC/WHO COURSE ON CANCER REGISTRATION AND CANCER CONTROL took place in Brazzaville, Congo (8-12 Feb, 2016). Dr Parkin chaired the workshop, representatives from AFCRN Member registries: Dr N’Da (Cote d’Ivoire), Dr Manraj (Mauritius) and Dr Chirpaz (Reunion) lectured on numbers of topics at the workshop. Representatives from the AFCRN Francophone registries participated at the workshop: Benin, Congo, Cote d’Ivoire, Guinea, Mali and Niger.

The IACR 38TH Conference took place in Marrakesh, Morocco 19-21ST October. AFCRN (Dr Parkin and Ms Chesumbai) organised a workshop focusing on DATA QUALITY AND REGISTRY OPERATIONS. Dr Parkin gave the Clemmessen Lecture: The evolution of cancer registration in Africa.
Some research results were also presented at the conference:
1. The Zambia National Cancer Registry: 2 years of data from Lusaka, 2012-13
2. Cancer risks in Nairobi (2000-14) by ethnic group
3. Black-white differences in cancer risk in Harare, Zimbabwe 1991-2010
4. Essential TNM: preliminary results from Malawi and Cote d’Ivoire

The UICC Congress 2016 took place in Paris, France 30th Oct – 3rd November. Some results (including the pilot Essential TNM study-3 centres; Kenya Ethnic study) were presented at the Congress, along with other finalised publications: Cancer in Africa II (Cancer in Sub Saharan Africa); Childhood Cancer in Africa.


Research Policy
To ensure that AFCRN members receive financial or scientific recognition for the work they do in support of research projects (and are not simply data providers to external researchers), AFCRN research policy requires that research projects within the context of AFCRN (i.e., involving more than one member) have to be submitted to, and approved by the AFCRN Research Committee. Criteria for collaborative studies have been developed ( Adherence to the policy is a criterion of AFCRN membership.
Progress: TRAINING
Training in Cape Verde (29 Feb – 4 Mar 2016)
Following a consultancy visit in Oct 2015, Dr Goncalo Lacerda (Portugal) was invited and supported by the Ministry of Health of Cape Verde and the AFCRN to provide a one-week training to 26 participants coming from different health institutions within Cape Verde. The goal was to train the future registrars in order to make possible the establishment of hospital-based cancer registries in each central hospitals (Agostinho Neto and Baptista de Sousa), and a population-based cancer registry under the direction of the MoH.

Train the trainers (IARC, Lyon)
Mrs Gladys Chesumbai (Eldoret, Kenya), Dr Guy N’Da (Abidjan, Cote d’Ivoire) and Dr Goncalo Lacerda (Centro de Oncologia dos Açores, Portugal) attended the CanReg instructor training course in IARC, Lyon January 2016. They are often contracted as CanReg trainers for AFCRN training courses in Africa.

Basic training – Accra, Ghana (13-23rd June 2016)
The Accra Cancer Registry, in collaboration with research team at Stanford University, organised a 10 days basic training course in Accra from 13-23rd June. Objectives of the training were to equip cancer registry personnel with knowledge and skills in cancer registration which would enable them develop and strengthen their registries to generate high quality data to inform research and policy formulation in cancer control. 17 students from cancer registries in Kumasi, Accra, Calabar, Ibadan, Abuja and Liberia attended. External sponsors: NCI (via Stanford Uni) and ROCHE.

Basic training – Libreville, Gabon (13-22nd September 2016, re-scheduled to 6-17th March 2017)
A basic training course in French was organised for 10-12 cancer registry staff from 8 countries in Libreville, Gabon. International students are from Cameroon, Cote d’Ivoire, Benin, Togo, Guinea, Congo-Brazzaville, Mali and Mauritania.

Due to the circumstances after the Presidential Election in the week before the course, in consultation with the local host (Director of the Cancer Institute), AFCRN postpone the workshop to early 2017.

CanReg advanced training course – Kampala, Uganda (10-14th October 2016)
This one week course, hosted by the Kampala Cancer Registry, entirely focused on the training of the use of CanReg 5. The course was led by Ms Gladys Chesumbai (Eldoret, Kenya) assisted by Francis Okongo (Gulu, Uganda). Nine students attended the course. They are from Kenya (Kisumu), Tanzania (Mwanza; Kilimanjaro), Mauritius, Zambia, Mozambique (Maputo), Uganda (Gulu; Mayuge).

Visiting fellows
24-29th October, Eric Chokunonga (Harare, Zimbabwe) visited Dr Parkin to complete the two studies: childhood cancer in Zimbabwe (1990-2014) and the three-centre TNM Essential study (contributing centres: Abidjan Cancer Registry, Malawi Cancer Registry and Harare Cancer Registry).

The TNM results were presented at the UICC World Cancer Congress in Paris, 1 Nov 2016.

Non AFCRN training courses
An intermediate level of training course was carried out at the National Health Laboratory Service (RSA National Cancer Registry) from 31 May – 10 June 2016. Over 20 people attended. The course was directed by Dr Elvira Singh, with participation of Dr Parkin, Eric Chokunonga (Zimbabwe) and Sarah Nambooze (Uganda).
PhD candidate Yvonne JOKO has been accepted by the University of Oxford for January 2017. As part of her research role, she will be providing research assistance to Dr Parkin on selected projects of the Network, especially related to cancers of the cervix and breast.
Duration: This is a continuous project
Publications: PUBLICATIONS in 2016
1. Wabinga H, Subramanian S, Nambooze S, Amulen PM, Edwards P, Joseph R, Ogwang M, Okongo F, Parkin DM, Tangka F. Uganda experience-Using cost assessment of an established registry to project resources required to expand cancer registration. Cancer Epidemiol.
2. 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.
3. Tangka FK, Subramanian S, Edwards P, Cole-Beebe M, Parkin DM, Bray F, Joseph R, Mery L, Saraiya M; Cancer registration economic evaluation participants.. Resource requirements for cancer registration in areas with limited resources: Analysis of cost data from four low- and middle-income countries. Cancer Epidemiol
4. 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. 2016 Nov 3.
5. Chokunonga E, Windridge P, Sasieni P, Borok M, Parkin DM. Black-white differences in cancer risk in Harare, Zimbabwe, during 1991-2010. Int J Cancer.2016 138(6):1416-21
6. Ekanem IO, Parkin DM. Five year cancer incidence in Calabar, Nigeria (2009-2013). Cancer Epidemiol. 2016 Jun; 42:167-72.
7. Monograph: Cancer in Sub Saharan Africa.
8. Monograph: Childhood Cancer Incidence in Africa.
9. AFCRN is collaborating with IARC to produce a report: Childhood Cancer in Africa, 1987-2012.
10. Manual: Version II of the “Standard Procedure Manual for Cancer Registries in Africa” in both English and French
11. Malawi Cancer Registry triennial report 2008-2010
12. Cote d’Ivoire Cancer Registry rapport 2014-2015
13. Incidence des cancers dans la commune de Cotonou (Benin) rapport, 2013-2015
14. Namibia National Cancer Registry report 2010-2014
Month: January
Year: 2016
Last Update: January 2017

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