Abstract 17: Cancer Control Through Surveillance: Harmonised Cancer Registration Guidelines for East Africa
Authors: Nakaganda Annet , Wabinga Henry , Kahesa Crispin , Uwinkindi Francois , Nsengiyumva Jonas , Mwenda Valerian , Katende Michael , Orem Jackson 
Published: June 2023

Purpose: Implementation of evidence-based cancer control strategies requires cancer registration data. However, cancer registration in East Africa is characterized by disparities in quality and coverage; insufficient harmonisation of procedures; different laws/legislation that limit data access; lack of networking, collaboration, and participation in cancer research; and insufficient national government recognition and funding. This aimed to harmonize the cancer registration guidelines and establish a coherent framework for enhancing cancer registration in East Africa.

Methods: The process of developing the “Harmonised cancer registration guidelines for East Africa” was participatory and engaged stakeholders from all the East Africa Community (EAC) member countries (Uganda, Kenya, Tanzania, Rwanda, Burundi, and South Sudan). Several strategies were used over a period of four years (2018-2021) including: 1) Partnership and leadership formation (the planning committee composed of the Ministry of Health officials and policymakers, the Steering Committee composed of experts in cancer registration, and the writing team); 2) review of relevant literature on cancer registration guidelines; 3) conducting a SWOT analysis of cancer registration in East Africa, and 4) holding three harmonisation conferences.

Results: The East African Cancer Registration Guidelines were harmonised under the stewardship of the East African Center of Excellency for Oncology at the Uganda Cancer Institute (UCI) and were approved by the East African Community Sectoral Council of Ministers of Health on 10th December 2021 (EAC/SCHealth/21/Decision 003) and a directive issued to all partner countries to use the approved guidelines (EAC/SCHealth/21/Directive025). Several outcomes were achieved including Commonly agreed-upon standards and processes for establishing and operationalizing cancer registries in the region; ownership of data and easy accessibility by the member states; and improved collaboration and networking among cancer registries in the region. The process also provided learning opportunities and was a catalyst for the individual countries that are now focusing on setting up their cancer registries.

Conclusion: Forging effective partnerships, wide stakeholder involvement; use of locally generated data; and locally-driven solutions are essential for generating local policies and creating a sustainable leadership structure for directing the cancer control effort in the region.

Citation Format: Annet Nakaganda, Henry Wabinga, Crispin Kahesa, Francois Uwinkindi, Jonas Nsengiyumva, Valerian Mwenda, Michael Katende, Jackson Orem. Cancer Control Through Surveillance: Harmonised Cancer Registration Guidelines for East Africa [abstract]. In: Proceedings of the 11th Annual Symposium on Global Cancer Research; Closing the Research-to-Implementation Gap; 2023 Apr 4-6. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2023;32(6_Suppl):Abstract nr 17.