INCTR Challenge Fund, Annual Report 2017

Branch: INCTR Challenge
President: Max Parkin
Board Members: Prof.Walter Bodmer; Emeritus Professor Ama Rohatiner; Adjunct Professor Ian Magrath
Year Established:
Annual Report: African Cancer Registry Network
Progress Report 2017


The AFCRN is one of the INCTR cancer registration programs.

2017 is the sixth 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.

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 2017, the majority of the funding for activities is from IARC. Through collaborations, some activities are also being supported by UICC, ROCHE, ACS, CDC/RTI, and the University of Halle. The AFCRN coordinating centre is fundraising for 2017-2018.

To date, the Network was supporting and/or assisting the development of 30 cancer registries in 23 sub Saharan Africa countries, including English, French and Portuguese speaking countries. A list of current members is shown in Appendix 1.

Training in Libreville, Gabon (7-16th March)
A 9-day (7-16th March) training course in Libreville, Gabon. The course was hosted by the Institut de Cancérologie de Libreville (Prof Ernest BELEMBAOGO) and partially funded by Roche. Eight international participants from six SSA countries (Cote d’Ivoire, Benin, Togo, Guinea, Congo and Mali), as well as local participants attended.

CanReg (Eldoret, Kenya)
Two in-house CanReg training took place in Eldoret, Kenya. Student Alphonce Mushi (Kilimanjaro Cancer Registry, Tanzania) and student Priscilla Hlophe (Swaziland National Cancer Registry) were tutored by Ms Gladys Chesumbai (Eldoret CR), the AFCRN CanReg Instructor, each for one week. Training objectives included the use of CanReg 5, tackling actual problems encountered by the registries and common cancer registration related matters.

By Dr Max Parkin
Dr Parkin evaluated the Swaziland National Cancer Registry on 13-16 Feb. After the assessment, it was discussed then agreed that the SNCR could join the AFCRN, on a provisional basis, becoming the 31st member.

Dr Parkin, accompanied by Dr Yvonne Joko (Cameroon), Dr Guy N’Da (Cote d’Ivoire) and Dr Emmanuel Chirpaz (Reunion), visited the cancer registry in Libreville Gabon on 6th March. The recommendation was to firstly complete data collection within the Institut de Cancérologie de Libreville (ICL), before expanding into a PBCR.

Dr Michael Odutola (Coordinator, Nigerian National System for Cancer Registries), contracted as an AFCRN Consultant, conducted a consultancy visit in the Ekiti Cancer Registry, Nigeria, 10 – 12 April. This visit was initiated following an invitation from Dr Abidemi Omonisi, Director of the Ekiti Cancer Registry. The finding was that the registry has good support from the Ekiti State University Teaching Hospital. However, results revealed only one source per cancer patient was recorded and that information on patients’ residence address was not well identified.

10th July, Dr Parkin spoke at the Accra Cancer Registry Symposium, and met with MoH, together with representative from Stanford University (US) and significant individuals from Ghana. The objective of the symposium and relevant talks was to set the stage to start a national cancer registration programme for Ghana. Dr Parkin emphasised that although the programme centre is likely to be in Accra, the experience and skills that the Kumasi cancer registry has already developed must be deployed when planning national activities.

14th July, Dr Parkin held talks with Prof Anderson DOH, Executive Secretary NCCP and Pr Paul NDOM in Yaounde, Cameroon. The goal was to find out whether restarting the cancer registry in Yaoundé was feasible, and if so, what requirement/input was needed. Due to individual challenges, the discussion did not come to any solid agreement and solution.

17-18th July, Dr Parkin visited the cancer registry in Douala. Although the situation in Douala was more favourable, it was disappointing to learn that neither the technicians trained in Libreville (mentioned above) has a funded post in the hospital. An application by a US researcher for an NCI grant to support cancer registration in Douala (and other centres in Cameroon) was unsuccessful. The question of funding for the registry remains open.

5-7th September, two representatives of AFCRN – Dr Anne Korir, Head of Kenya National Cancer Registry and Dr Charles Dzamalala, Head of Malawi Cancer Registry – were invited to speak at the inaugural meeting of the Project: Strengthening Statistical Capacity Building for Cancer Registries in East Africa. The Project was coordinated by The East, Central and Southern Africa Health Community (ECSA-HC), funded by the World Bank.

Prior to the meeting, Dr Parkin has sent an AFCRN position paper to all AFCRN members, once again, to remind all members the policy on providing registry data to outside agencies; and to emphasise the real needs for improving cancer registration in the region was to strengthen the existing ones and to avoid establishing additional new cancer registries irrationally.

Follow up conversations were being held between ECSA HC and IARC.

13-16 September, Dr Parkin visited the cancer registry in Ouagadougou, Burkina Faso. The purpose of the visit was to discuss the re-start of the cancer registration for Ouagadougou. Dr Parkin’s visit was much welcomed and appreciated by the MoH, WHO officers and other stakeholders. In conclusion, there seemed to be enough support from government to fund a restart of registration.
The AFCRN Childhood Cancer Registration project was also introduced to them. An in-depth assessment to various sources of data and training to local staff, by Cecile Ingabire, were planned for January 2018.

11-20th September, prior to Dr Parkin’s arrival (18-21st), Dr Michael Odutola, from the Nigerian National Systems of Cancer Registries, visited the Sierra Leone Cancer Registry in Freetown as an AFCRN consultant, and provided a one week training course on cancer registration methods to the local staff. After the inspection by Dr Parkin, it was decided that the SLCR would receive some financial support to undertake retrospective data collection for the years 2015-2017. The MoU to support this work expired on 31st Dec 2017.

9-11th October, Eric Chokunonga assessed the establishment of the Ekurhuleni Cancer Registry in Johannesburg (South Africa). The aim was to help identify the major sources of information on cancer cases.

25th October – 3rd November, Eric Chokunonga conducted a consultancy tour to two cancer registries (Mwanza and Moshi) and one hospital site (Mbeya) in Tanzania. The visits formed part of the Tanzania National Cancer Registration Program, coordinated by the Vital Strategies and the AFCRN, and is supported by the Bloomberg Foundation.
Findings were a) CanReg support was needed for the Mwanza and Moshi cancer registries; b) a more in-depth inspection was needed for the Mbeya city and Mbeya district; c) an exploratory visit to Dodoma municipal district will be necessary.

21-24th November, Dr Parkin participated at the cancer registration stakeholders meeting in Dar es Salaam. Other meeting attendees included Dr Sarah Maongezi, Acting Assistant Director for NCD MoU Tanzania, medical professionals from cancer registries or hospitals in Tanzania, and representatives from the Vital Strategies. The purpose of the meeting was to bring together all of the relevant stakeholders to discuss the current status of cancer registries in Tanzania, jointly identify MOH priorities pertaining to population-based cancer registries, and jointly draft a work plan that reflects these priorities. During the meeting, Dr Parkin presented the findings and recommendations provided by consultant Eric Chokunonga.
During that week, Dr Parkin also made a number of visits in Dar es Salaam (inc. to the Ocean Road Cancer Institute, Muhimbili Medical Centre and the Aga Khan Hospital). The objective of the visits was to review the current status of cancer registration in the major facilities with cancer treatment services in Dar, with a view to making plans for population based registration for the city. The conclusion is that establishing a population based cancer registry for Dar is difficult; nor finding one single centre among the big institutes to act as the coordination centre for the region. The decision of how to move forward will be formulated as part of the strategic plan for Tanzania, one of the expected outcomes of the Tanzania National Cancer Registration Program.

5th Annual Review Meeting (ARM) December 2106
The meeting was held in Kumasi, Ghana. Hosted by the Kumasi Cancer Registry (Komfo Anokye Teaching Hospital), Ghana. 35 representatives from member registries as well as significant individuals from other cancer control organisations and non-member registries attended the 3 day ARM (18-20th December 2016). The meeting included presentations, discussions and lectures. The ARM had two components:
1. A general meeting of AFCRN members to review activities in 2016, agree common policies and membership rules, and plan activities for 2017.
2. Presentations from:
a. All AFCRN members on their work progress in 2016
b. selected AFCRN members, on
i. problems/solutions and innovative work in registration,
ii. research activities,
iii. local and international collaborations
c. members of the steering committee, on
i. Activities in other regional Hubs relevant to the African consortium (AFCRN)
ii. GICR/IARC/IACR activity - activities relevant to African members
iii. Activities within WHO AFRO relevant to the African members
d. Coordination centre on 5 year progress report of the Network
e. Observers and research partners, on
i. Ongoing and new research projects
Minutes were circulated to participants, and copies are available on request.

A grant application has been submitted to the VolkswagenStiftung Foundation for the support of the 6th annual meeting (2018), coupled with a scientific workshop with a strong focus on cancers related to infectious diseases.

AFCRN hosted a session ‘Cancer Registries’ in AORTIC Conference on 7th November in Kigali Rwanda. It included eight presentations:
1. Cancer in Sub Saharan Africa II - Anne Korir (Kenya)
2. Cancer of childhood in Africa – Cristina Stefan (South Africa)
3. Cancer in Francophone West Africa – Guy N’da (Cote d’Ivoire)
4. Influence of clinical, pathological and treatment factors on outcome of common cancers in Africa– Eva Kantelhardt (Germany)
5. Trends of BC in east Africa (Kampala, Nairobi, Harare) – Yvonne Joko (Cameroon)
6. Staging cancer in cancer registries: Essential TNM – Steady Champhisa (Malawi)
7. Survival from cancer in Africa – SurvCan 3 – Freddie Bray (IARC, Lyon)
8. Estimating cancer in Africa in Globocan 2016 – Max Parkin (Oxford)

Dr Parkin also spoke at other sections:
Building capacity in anatomical staging: terminology and essential TNM (discussion panel lead)
The impact of late presentation on cancer survival in Africa (Cancer survival in Africa)

It was a good occasion for AFCRN members, researchers and colleagues to catch up and discuss future collaborations.

IACR Conference 2017
The 39th Annual Conference of the International Association of Cancer Registries was held in Utrecht, 17-19 October. Prior to the Conference, Dr Parkin lectured at a workshop on Staging and Essential TNM. A number of African cancer registrars attended the workshop.

The MoU is the mechanism used by INCTR to set up contracts with the member registries of the AFRCN, to provide them with funds to perform agreed tasks. In 2017, MoUs for general support and of research, with total sum of £30,000, have been agreed. They were with member registries in Abuja, Cotonou, Cote d’Ivoire, Nairobi, Sierra Leone, Malawi, Brazzaville, Kampala, Seychelles and Harare.

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 sub Saharan Africa I’, in collaboration with IARC, funded by ACS is in press.
It was suggested that the new series of Cancer in sub Saharan Africa should be prepared in 2018. Publication of the first results from Gulu cancer registry and the Benin cancer registry and a study of trends in incidence of breast cancer in SSA will be published during 2018.

3. AFCRN Database. As agreed at the ARM in Kumasi (Dec 2016), a new data submission, comprising a listing of case records (anonymous) from each AFCRN member, was requested in May. The database is hosted by IARC under a Research Agreement. Contributing to the database is a criteria for membership of AFCRN and most members did so. A few experiencing technical difficulties are working on the request. Access for research studies (including by IARC researchers) is via request to the AFCRN Research Committee.

Data from this year’s submission will be used for Globocan 2018.

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 11 centres (Eldoret, Nairobi, Benin, Brazzaville (tbc), Abidjan, Bamako, Maputo, Namibia, Uganda, Bulawayo and Addis Ababa). The data collection is finished at most centres except the two new centres: Namibia and Brazzaville.

The focus is on the most frequent cancers in females and males in sub Saharan Africa, for which early diagnosis, and effective treatment, are expected to results in favourable outcomes: Breast (female), cervix, prostate and colorectal cancers, and non-Hodgkin lymphomas).

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 available within the African continent was the one from RSA. Since the UICC WCC (Nov 2016), Dr Parkin had been in contact with Mr Jonathan Liberman from the Cancer Council and the McCabe Centre for Law and Cancer, Australia to pursue their professional voluntary help. Unfortunately, Mr Liberman had to redraw his offer in the end due to lack of resources.
Now, the proposal has been put to the Bloomberg Foundation and early discussion is being held.

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.

1. SurvCan 3. This third study of cancer survival in low and middle income countries was launched last year. 11 member registries took part in this study: Abidjan, Addis Ababa, Eldoret, Nairobi, Blantyre, Mauritius, Bamako, Kampala, Harare, Eastern Cape and Seychelles. Data collection has been completed in all participating centres except Kampala.

The follow up results from the Treatment and Follow-up Study, led by Dr Eva Kantelhardt, will also be used in SurvCan 3.

2. After completing the initial research work, Economic Assessment of the Resources Required to Report High Quality Cancer Registry Data: A Cost Study, in Kenya and Uganda, the US Centers for Disease Control (CDC) together with the participating centres published a number of publications on their findings.

In early 2017, CDC partnered with RTI and AFCRN started a new exercise (in May): Pilot testing the online costing tool in six member registries: Abuja, Nairobi, Kampala, Seychelles, Eastern Cape and Harare. All registries completed their data collection and entry. Analysis and reporting are in final stage.

3. Field trials of the “Essential TNM” in Harare (Zimbabwe), Abidjan (Cote d’Ivoire) and Blantyre (Malawi) cancer registries completed last year and data have been analysed and presented in both IACR conference and UICC WCC last year. It was observed that cancer registrar with relevant oncology background knowledge did significantly better than those without. Therefore, it is considered that a new training component is needed for the general data registrar.

AFCRN received a grant support from the pharmaceutical company ROCHE to support a) the development of such a new training course, including appropriate training materials; b) a tailored training courses.

4. The monograph book of Cancer of Childhood in Sub Saharan Africa is now published. Data from all member registries was reviewed and 16 registries with >100 cases registered in a recent time period of 10 years or less were invited to join the study. This project has been funded by the South African Medical Research Council. PI is Dr Cristina Stefan. Africa.php%20%20

5. A publication Survival from Childhood Cancers in Eastern Africa: A Population-based registry study was being prepared. It is in final stage of editing, to be published in 2018. The data was from the Childhood Cancer Survival Study funded by the South African Medical Research Council. PI is Dr Cristina Stefan. Participating centres: Kampala, Nairobi and Harare (the data from Bamako were of insufficient quality).

6. The study of Expression of Hormone Receptors in West, East and Southern Africa - Breast Cancer Biology in Africa is complete. It was funded by Martin Luther-Universität Halle, Germany. PI is Dr Eva Kantelhardt. Several AFCRN members, including Beira, Blantyre, Calabar, Conakry, Kampala, Kumasi, Niamey & Abuja, as well as two pathology labs from Cote d’Ivoire took part. Results have been analysed and are to be published.

7. The Bloomberg Philanthropies - Data for Health Initiative has partnered with AFCRN to provide technical guidance to country partners and to the implementation team at Vital Strategies, and necessary trainings. The pilot country in SSA is Tanzania. The project “Tanzania National Cancer Registration Program “started from October 2017, for 18 months. The goal is to develop a national cancer registration programme for Tanzania. AFCRN consultancy visits, training courses, CanReg support and individual registry support are included in this program.

8. The Foundation Sanofi Espoir, responsible for the My Child Matters Program, funded a one-year pilot program to strengthen childhood cancer registration in Africa. In this pilot phase, registries in 3 Francophone countries are involved. The program involves 1) Extension of childhood cancer registration to cover the entire national population (rather than the more limited geographic area covered by the general registry). 2)Staging: to teach cancer registrars to record stage, using the simplified staging scheme “Tier 1”, as it appears for childhood cancers, in the TNM Manual (8th Revision). 3) To conduct a study of survival from 6 major neoplasms of childhood, diagnosed in more recent years. Participating centres are Cote d'Ivoire (Abidjan), Republic of Congo (Brazzaville) and Burkina Faso (Ouagadougou) (1 and 2 only). Two Anglophone registries (Kampala and Harare) will take part in the survival study (3).

Some AFCRN consultancy visits, training courses and individual registry support are included in this program. The project began in October 2017, and a research assistant has been employed to assist in its implementation (see below).

PhD candidate Yvonne JOKO started her doctoral studies at the University of Oxford in 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 breast.

Ms Cecile Ingabire, Rwanda Cancer Registry, has been contracted as a research assistant for the childhood cancer projects, and is providing training and technical advice to all participating centres. A training course is planned for January 2018, combined with an initial visit to Burkina Faso.

Mrs Biying Liu is maintaining the website
The website is the main forum for publicising the Network’s activities and collaboration guidelines. Providing an introductory page is one of the criteria of becoming a member of the AFCRN, and members are encouraged to keep it up to date.

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. 2016 Dec;45 Suppl 1:S30-S36

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. 2016 Dec;45 Suppl 1:S20-S29.

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 2016 Dec;45 Suppl 1:S50-S58

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. 2017 Feb 15;140(4):788-797.

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. Parkin DM, Stefan C. Editorial: Childhood Cancer in sub-Saharan Africa. Ecancermedicalscience. 2017 Jul 28;11:ed69

8. Singh E, Joffe M, Cubasch H, Ruff P, Norris SA, Pisa PT. Breast cancer trends differ by ethnicity: a report from the South African National Cancer Registry (1994-2009). Eur J Public Health. 2017 Feb 1;27(1):173-178.

9. Schonfeld SJ, Erdmann F, Wiggill T, Singh E, Kellett P, Babb C, Schüz J. Hematologic malignancies in South Africa 2000-2006: analysis of data reported to the National Cancer Registry. Cancer Med. 2016 Apr;5(4):728-38.

10. Singh E, Ruff P, Babb C, Sengayi M, Beery M, Khoali L, Kellett P, UnderwoodJM. Establishment of a cancer surveillance programme: the South African experience. Lancet Oncol. 2015 Aug;16(8):e414-21.

1. Monograph: Cancer in Sub Saharan Africa.
2. Monograph: Childhood Cancer Incidence in Africa.
3. Malawi Cancer Registry triennial report 2008-2010
4. Cote d’Ivoire Cancer Registry rapport 2014-2015
5. Incidence des cancers dans la commune de Cotonou (Benin) rapport, 2013-2015
6. Namibia National Cancer Registry report 2010-2014 

Appendix 1.

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 National Cancer Registry
20. Swaziland:
Swaziland National Cancer Registry
21. Uganda:
Gulu Cancer Registry
Kampala Cancer Registry
22. Zambia:
Zambian Cancer Registry
23. Zimbabwe:
Zimbabwe National Cancer Registry
(Harare Cancer Registry, Bulawayo Cancer Registry)
Future Plans:
Publications: See body of text
Month: 12
Year: 2017
Date of Last Report: 2016
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