How the Young Leaders Programme helped me accelerate Rwanda’s efforts towards better cancer data

In 2017, I was selected as a UICC Young Leader and started the programme by attending the World Cancer Leaders’ Summit 2017. My participation concluded at the World Cancer Congress 2018 in Kuala Lumpur. Between these events, I was given the opportunity to attend a regional conference or pursue a study visit to learn from countries in similar contexts.

I decided to visit the Zimbabwe National Cancer Registry (ZNCR) to acquire practical skills and knowledge to establish a population-based cancer registry in Rwanda. ZNCR is part of the Parirenyatwa Group of Hospitals which is a government tertiary referral centre that provides most of the cancer management services for the northern part of Zimbabwe. ZNCR was established in 1985, and as a model cancer registry for over 30 years, it offers a significant learning opportunity for other countries in the region.

“The scientific visit to the Zimbabwe National Cancer Registry has been very important to me. As the person who will be leading the establishment of the Rwanda National Cancer Registry, I had a great opportunity to learn how to establish, manage, and sustain a population-based cancer registry with minimal resources.”

I was welcomed by Mr. Eric Chokunonga, the cancer registrar, and learned about the history of ZNCR, its main activities, standard operating procedures, challenges, and future projects. I was introduced to African Cancer Registry Network (ACRN) guidelines for cancer registries, shown how to create a cancer registry data abstraction form in order to systematically collect data from patient records, and given an introduction to the CanReg software for cancer registries. ZNCR colleagues demonstrated proper procedures for data entry, cleaning, and analysis in CanReg to ensure accurate, complete, and robust information.

I toured various departments of the Parirenyatwa Hospital and observed how staff collected data for the registry. I met with different stakeholders involved in the implementation of the registry, such as members of the ZNCR Advisory Committee and Dean of the College of Health Sciences. I discussed why population-based cancer registries are so crucial for national cancer prevention and control and learned how to effectively leverage support from universities, private treatment facilities, and the government during a registry’s implementation. I also toured two private care centres, Lancet Laboratories and Oncocare Cancer Treatment Centre, which collaborate with the ZNCR and provide data on a regular basis. I met with the head of the NCD Division at the Zimbabwe Ministry of Health (MoH) to learn about what support the MoH provides to ZNCR, including funding, and why active government collaboration is important for the sustainability and quality of any national cancer registry.

My visit to ZNCR gave me new technical and strategic skills for establishing and running a population-based cancer registry in Rwanda. Soon after this visit, the Rwandan National Cancer Registry began collecting its initial data from Rwandan University Teaching Hospitals which diagnose and treat cancer. We aim to establish a population-based cancer registry in Kigali and progressively expand to other regions.

“The knowledge and skills gained from the Zimbabwe National Cancer Registry (ZNCR) are helping a lot in the initiation of our cancer registry in Rwanda, as we are using a similar implementation strategy. ZNCR kindly offered to provide technical support to our cancer registry throughout its implementation.”

Personally, the regional visit was one of the highlights of the Young Leaders Programme. It allowed me to create a collaborative relationship between ZNCR and the new Rwandan National Cancer Registry. The partnership will strengthen both registries and will provide a model for other sub-Saharan African states who are creating their own population-based cancer registries.