We started collaboration on oncology in 2009, almost nobody was interested in those days. Luckily we had the chance to receive an early grant in 2011 and we used that to start and acquire some staff for the cancer registry of Addis Ababa city, it’s population-based, and now we’re collecting data since then.
Is your current focus only on one city?
Yes, 3.05 million people, that’s what’s usually recommended for African countries to have a complete collection in one big city where you have the diagnosis and the facilities of pathologists.
What data have you collected?
Mainly it’s the basic data for population-based cancer registration, that’s, of course, the ICDO coding, that’s the entity, what kind of cancer, the date, we collect the names and the age of the patients. Then they try to collect the stage, which is a bit difficult, and they try to collect data on therapy. The patient must have attended Addis Ababa city.
What are the challenges specific to Ethiopia in regards to collecting data?
One specific problem, but that’s also in many other countries, is the sustainability and the funding. We hope very much that soon the government will take over the registry otherwise you rely on short-term funding. The other issue is there is some problem of collecting all cases, of course there are patients who don’t reach the formal health system, and also the may be a bit of trouble of accuracy on diagnosis because the facilities are limited and, for example, like pancreatic cancer, you will never find that but that’s also a wide-known problem.
Where does the funding come from?
At the moment it’s WHO funded; it was funded from our research grant and also the American Cancer Society which was then also through the International Agency for Research in Cancer, now it’s WHO and we will see for the middle of next year.
Do you think the Ethiopian government could fund this in future?
We hope very much, they have just now finalised a national cancer control plan and cancer registration is one part so we hope that they will take over.
Could the data save the country money in the long term?
Yes, and definitely to evaluate their cancer control activities in many ways, yes.
Are there any further key points?
I think it’s very good and very encouraging to have the network and to see that within like three or four years out of four cancer registries participating now it’s 26. I think it’s very encouraging to see perspectives and to put the issue on the table.
What are your end goals once you have collated the data?
It is submitted to IARC and on the home page of GLOBOCAN you can find the letter from Ethiopia. We have found that’s a bit unique to Ethiopia, definitely breast is the number one for females and then for males it was the colorectal cancer in our first year. We didn’t have any other African country like that and we had a lot of leukaemias. So more research is needed why this is the case.