Junior Awardee: Prevalence of Parkinson's in Kenya | Congress 2026

And today, as part of the MDS Congress 2026 series, we're going to be talking to Dr. Richard Morton, who is a teaching and research fellow at Northumbria Healthcare NHS Foundation Trust and a PhD student at Newcastle University. He is the winner of the Junior Award for the MDS Congress 2026 for his study on the prevalence of Parkinson's disease in Kilifi County, Kenya: a Transforming Parkinson's Care in Africa, or TraPCAf, study.

Thank you for joining us today, Dr. Morton.

Dr. Rich Morton: Thanks a lot for having me.

Dr. Sara Schaefer: All right. So I want to start by talking about the wider study, [00:01:00] the TraPCAf, or Transforming Parkinson's Care in Africa study. What is that study, and can you just tell us a little bit about it?

Dr. Rich Morton: Sure. So TraPCAf is a multi-methods and multi-country study, and it actually is a collaborative global health research group funded by NIHR in the UK. It's a collaboration between Newcastle University and seven countries across Africa, including Egypt, Ethiopia, Ghana, Kenya, Nigeria, South Africa, and Tanzania.

And together all of the sites are working essentially on a standardized protocol and standardizing their methodology so that there will be comparable data across a cohort of 1,000 people with Parkinson's disease and 2,000 age- and sex-matched controls. And those patients and controls are recruited through a variety of methods.

For most of the sites involved in the study, it's a case of recruiting through [00:02:00] outpatient clinics. But there are also four embedded prevalence studies, because prevalence is one of the key work packages that forms a core part of the TraPCAf project, and so the prevalence studies in Lagos, in Sogokope in Ghana, in the Hai District of Tanzania, and Kilifi in Kenya, which was the study that I was working on, form those four prevalence studies for recruitment.

The study has been a four-year project. It started in 2022 and has just completed in August '26. We're now at a phase where we're pulling together a huge amount of data, as you can probably imagine, across all of these different work packages, and we're really excited to be able to keep looking at that, alongside continuing activities in terms of community engagement and awareness-raising activities that we've been undertaking across all of the different sites and countries.

So it's been a, a monumental achievement and has taken a huge number of people across these different sites. [00:03:00] And yeah, a huge amount of work, but I think we've been able to see a real impact on people with Parkinson's already across these different countries. And I look forward to seeing the ongoing and lasting legacy that it might have.

Dr. Sara Schaefer: As you mentioned, yours is one of several prevalence studies, because just limiting what you're studying to the people that make it to the medical system might not be reflective, right? And so tell us about this community-based study protocol that these prevalence studies are using and that your study used, and why you think that community-based type approach is important, particularly on the African continent.

Dr. Rich Morton: Sure. So the methodology that we used was inspired by Dr. Dotchin's study in Hai District in Tanzania back in 2008, who is one of the co-investigators on TraPCAf. And the reason for that is that the awareness of Parkinson's disease [00:04:00] is very low, especially among a lot of people within the community but also among a lot of healthcare practitioners.

And while we were undertaking these studies, we would often do educational events and continuing medical education events for staff across hospitals. For many people they may have heard of Parkinson's disease briefly in their training, but it was never really a focus because there has been a longstanding assumption that Parkinson's disease is not very prevalent across Africa.

And this tends to come from some very early studies in the 1970s or so. And then that formed an assumption that continued from there. So I think one of the challenges is that a lot of current prevalence studies across the world can often be done using hospital-based prevalence studies and looking at medical records.

But the challenge there is that if people aren't aware that Parkinson's disease is a problem and therefore don't necessarily seek healthcare for that reason, especially if it's the negative symptoms of slowing [00:05:00] down or feeling stiffer, many people, even some of my patients in the UK, attribute those symptoms to old age, and it's not surprising that people are doing similar things across the sub-Saharan African countries that we were working with.

But an added challenge on top of that is access to specialists, and we know that there are far too few neurologists across many countries in sub-Saharan Africa. And Kenya, where I was working, is an example of that in terms of on the coast, which is where Kilifi is, the nearest neurologist was in Mombasa, which for many of the patients that we were seeing within our prevalence study was over two and a half to three hours away.

And that was unaffordable to travel there. It was unaffordable to get an appointment. And so all of these barriers really mean that hospital-based prevalence studies are missing a huge number of people.

Dr. Sara Schaefer: So let's get into the weeds a little bit of your methodology. It seems from reading the abstract that this must have been a really big time commitment. Let's get into the [00:06:00] details.

Dr. Rich Morton: We started out for the Kilifi prevalence study in March/April time in 2024. There were a huge number of stakeholders that we had to get involved in terms of Ministry of Health and lots of approvals and things on the ground as well that we needed to get set up.

But then from there, one of the reasons that we chose Kilifi was that the Kenyan Medical Research Institute, which is known as KEMRI, and the KEMRI-Wellcome partnership, have a very well-established demographic surveillance system in place in Kilifi, which they've used for epidemiological research, particularly around infectious diseases, for quite a long period of time.

That provided an opportunity to utilize existing work by collaborating with them rather than having to set up a demographic surveillance system from square one, which would be, as you say, a huge amount of work. Even as it was, there was a lot of work involved. The surveillance system, the KHDSS as it's known, has [00:07:00] 30 field workers who we trained on Parkinson's disease and then ran through the screening tool that we wanted to apply, which is a 5-item screening tool, which was adapted from Dr. Dotchin's study back in 2008. And so this then enabled them to know what they were looking for, essentially, because many of these field workers had not heard of Parkinson's before. So after that training, we were able to run the census with the embedded screening tool, which took several months. And alongside that, myself and the research team, once we started getting some positive respondents, were then going out and reviewing people.

And so we'd set things up with local health clinics so that, within an area, we could see nearby people rather than have to see everybody in their own homes. Because we ended up having over 1,000 positive responses, it would've been very challenging to do every single person in their own homes.

Although we did end up seeing quite a number of [00:08:00] people at home because there were lots of people who couldn't make it to nearby health centers. And so from there, we reviewed people using clinical assessment and the MDS clinical criteria for Parkinson's disease to diagnose people with Parkinson's.

For those people who we felt didn't have Parkinson's, we tried our best to come up with an alternative medical diagnosis. Sometimes that was much more obvious than other times. Sometimes people had known diagnoses, but with a lack of investigations and seeing people in their own garden, it can be quite difficult to come up with a comprehensive list of differential diagnosis.

The focus really was trying to determine the presence of Parkinson's disease. And then from there people who did have Parkinson's disease were offered recruitment into the wider TraPCAf study that we talked about earlier.

Dr. Sara Schaefer: So you started with 81,662 patients that were screened, got down to just over 1,000 that [00:09:00] required actual medical screening as opposed to non-medical screening, and then ended up with a list of how many people that you diagnosed with Parkinson's disease?

Dr. Rich Morton: Yeah. So out of that we then ended up diagnosing 25 people with Parkinson's disease. There was then one additional person who had vascular parkinsonism and one additional person who had drug-induced parkinsonism, within those numbers. So, quite small numbers of people with Parkinson's in the grand scheme of things, and my supervisor, Professor Richard Walker, said of his previous prevalence studies in Hai District that sometimes running a prevalence study for Parkinson's disease is trying to find a needle in a haystack that doesn't know it's a needle. And I think in some ways it is quite an apt metaphor in that the lack of awareness that people have definitely had an impact in our ability to identify people and also people's engagement.

We ran a number of community sensitization [00:10:00] events to try and raise awareness of Parkinson's disease across the villages that we were working with prior to running the census so that people knew why we were asking these questions and what this problem was. But even then, it's well documented that there's quite a lot of stigma around Parkinson's across the world.

But there has been quite a bit of research done in sub-Saharan Africa, and particularly there have been some studies in Kilifi and Nairobi in Kenya highlighting the fact that stigma and superstitions sometimes around Parkinson's disease is a particular issue.

Dr. Sara Schaefer: I thought it was really interesting that of those 25 that you identified, 84% were newly diagnosed with Parkinson's through this study, which speaks to what you just said, that the needle in the haystack doesn't know that they're a needle, right?

Dr. Rich Morton: I think that is a really good point, and I think that really cuts to the core of this study, in that if we had relied on hospital-based methodology, then 84% of our participants would not have [00:11:00] been identified. And it wasn't for lack of trying, I think is the important thing. It wasn't that these patients had these symptoms and said, "Oh I don't know what this is and I'm not going to try and find out."

A lot of these people had sought help from healthcare. They'd sought help from traditional healthcare practitioners and traditional medicine in various forms across the region. And people didn't know what was going on, or they said, "Oh, that tremor is hypertension; don't worry about it," or, "Take these antihypertensives."

And so that then forms a real issue, and it makes us question whether or not hospital-based prevalence studies are going to be giving as accurate information in areas with low awareness of Parkinson's disease. And so that really is such a key point that we were able to engage with these people, link them with local support groups, explain that they're not alone, 'cause a lot of these people had never met anybody with Parkinson's disease before.

And I think knowing, it's the same with the patients that I was meeting there as it is with my [00:12:00] patients in the UK, that if you've never met anybody with your condition before, it can be very isolating. And the impact that support groups can have is transformative.

Dr. Sara Schaefer: So that brings me to, what do we do with this information, right? As we mentioned, this was a huge screen of more than 80,000 people, a lot of manpower. Do you think that periodically this kind of thing needs to be done clinically in order to actually identify these people and get them towards treatment?

Or does this just inform what needs to be done from an educational perspective? How do you see using this data to either inform future research or inform future education or clinical processes?

Dr. Rich Morton: I would agree that it doesn't feel viable to try and suggest that huge community-based screening undertakings should be done purely for clinical purposes. These screening tools are imperfect. They have a [00:13:00] very low specificity because they intentionally tried to design them to have such a high sensitivity, and as a result, we ended up having to screen 950+ people who didn't have Parkinson's disease to find 25 who did.

I think that is very hard to justify suggesting that should be used in clinical practice. I think as a research tool to show that the problem is out there, and that the problem is underestimated, and that there are people with Parkinson's disease who are flying under the radar, I think it's invaluable, and I think it really highlights that diagnostic treatment gap.

And as a result of that, I think that provides a platform to lobby for these people and to really help raise the awareness around this issue to try and convince policymakers that maybe there should be more priority given towards Parkinson's disease in some of these areas. Every country signed the Intersectoral Global Action Plan for epilepsy and other neurological disorders, which is [00:14:00] a WHO initiative, back in 2022.

And a key part of that is about increasing the priority for policymakers for neurological disorders because they are often underestimated, especially in low- and middle-income countries. This really just proves that point and drives that home. And I think from there, it's a case of further education, both medical education and community education, as a tool, as part of wider awareness-raising measures.

Dr. Sara Schaefer: Thank you for sharing all of this with us today and congratulations.

Dr. Rich Morton: Thank you very much. [00:15:00]