I’ll be talking about the work that we’ve done to establish a cancer registry in Kisumu, Kenya, a population-based cancer registry.
How did this work get started?
Most of the cancer registries in Africa, there’s the African Cancer Registry Network now, I think, has 29 countries but in most countries there’s only one registry and what we’re trying to do is to go beyond the capital city, Kisumu’s a secondary city, and try to build a population-based registry outside of the capital. I’ve been doing research in Kenya since 2001 and started on Burkitt’s lymphoma, trying to look at the incidence and understanding the cause of Burkitt’s lymphoma, and in doing that began to realise that we don’t really have an understanding of the incidence of any of the cancers there. So how do we begin to do that? So I’ve been working on this population-based cancer registry.
What challenges have you faced so far?
Training is the number one challenge, to get our cancer registrars to have the adequate training. So that’s been… we’ve gotten some funding to send our two registrars to get training. Thinking about, even with the cancer registrars, how do they look through the data, the medical records and understand what cancer is versus something that’s not cancer. So education of the cancer registrars is an important part and was not really a systemised aspect to that.
The other piece is the medical records are in a state of… just not very well put together, let’s put it that way. So we tried to look at all the different hospitals, laboratories, medical records, death records, trying to connect all the cases but a lot of cases go elsewhere to get treatment so we lose those cases. So we’ve had a lot of challenges.
Are you interacting with a site in the capital?
We’re part of the Kenyan Medical Research Institute so Kenya has just established a National Cancer Institute, as of February 2015. Cancer registry is a key partner with that so we’re with the Kenyan Medical Research Institute. They have the one in Nairobi which is the… Anne Korir who directs that and is pretty amazing, and then in Eldoret and then in Kisumu and then we’re trying to… the long term is to establish it in other sites throughout Kenya.
Why is this registry important?
Registry is important to know about both the incidence of cancer so you can develop control programmes and prevention programmes. So direct resources for a country to understand what are the top cancers, maybe we should focus on breast cancer, if that’s the predominant cancer we should focus on that. Or if we see, for example, a high incidence of oesophageal cancer in both men and women, and this is true in other African countries, it’s not true, say, in the US, so then what would be the cause of that? So to know that that’s very common and the high incidence then how do we now begin to understand why.
Is the Kenyan government interested in funding this?
Right now the Kenyan government is supporting the development of the cancer registries and beginning to get by in moving towards that. There’s a strong collaborative tie with the National Cancer Institute in the US to help support cancer registry capacity building in Kenya. And a lot of other partners as well – IARC, the International Agency for Research in Cancer. But the NCI is making a big push to help the cancer registry capacity building.
Is this data being used outside Kenya?
My data right now is at the point of we’re just beginning and trying to understand it. So I wouldn’t say the quality of the data is as robust, that it needs to be shared. But through the African Cancer Registry Network that partnership of those 29, we’re not a member yet, our small little registry, we’re trying but the quality of our data has to improve before we do that.
What’s next?
I’m looking forward to getting to the point where we can use the data to really begin to understand the different types of cancer and incidence. I think it will be interesting when we get there.
