Volunteers shaping our research

We've surveyed volunteers to understand what they want us to achieve, as part of our effort to understand their views and opinions. Find out what they said.

Top three health conditions: 54% Alzheimer's / Dementia, 53% Heart disease, 29% Stroke

What research matters to our volunteers?

Across our three Viking Genes studies, we have collected lots of information about volunteer health, lifestyle, environment and DNA. We also link to data from their health records, so that we can follow their health over time. With so much information, we could research many common conditions such as heart disease, cancer and diabetes. We also look at a range of other health topics including:

  • How differences in our blood might lead to ill health
  • Understanding healthy ageing
  • History of the population

Our volunteers make our research possible. For that reason, we think it's vital that any research we do takes their thoughts and opinions on board. This led to the development of an anonymous survey to understand what research matters to them. More than 1,400 people shared their opinions with us on a range of questions. 

We had some interesting findings from our survey! When asked what health conditions they felt we should research, more than half of our volunteers felt we should focus on Alzheimer's / Dementia (54%) and heart disease (53%). Stroke (29%) was the third most important condition to our volunteers. Covid-19 had the least amount of support, with only 3% saying it was an area of interest to them.

We also asked them to take a look at some of our current research areas and to pick their top 3 choices. This will help us figure out what research we should continue to develop in more detail. 77% ranked understanding the genetic distinctions between the Northern Isles and other populations in their top three. In second place, 56% of volunteers wanted us to learn more about how to predict which health conditions people might develop and, in third place, 53% wanted us to work on return of 'actionable' genetic results.

Finally, when asked about genetic history of the Northern and Western Isles, Scotland and northwest Europe, 79% said they had an interest in this area of research.

We're still working through this fantastic response and we'll keep this page updated.

Why was Multiple Sclerosis such a big focus of our ORCADES research?

In 2004, we set up the Orkney Complex Disease (ORCADES) study. We visited a number of the North Isles of Orkney, including Stronsay, Sanday and Westray on "fact-finding missions". We met with community leaders, medical staff and potential volunteers. While they welcomed our study, they also asked us to study the causes of the high rates of Multiple Sclerosis in Orkney.

Jim, upon realising the importance of this research to the community, applied for funding. In 2008, he was awarded a grant from the MS Society to carry out the Northern Isles Multiple Sclerosis (NIMS) study. Jim also took part in a small grant from the Chief Scientist Office (CSO) to perform the first prevalence study of Multiple Sclerosis in the Northern Isles for decades. He won funding from the Volant Trust for genetic analysis of the NIMS samples. The Multiple Sclerosis strand of research crossed paths with the main ORCADES study through the CSO funding of the ORCADES Vitamin D study.

Inspired by this, the local communities set up a new charity, the Shetland and Orkney Multiple Sclerosis Research Project. It funded the fees and stipends for two PhD studentships in Jim's group, at The University of Edinburgh, to analyse the data from these grants. This was all thanks to local fundraising in the Northern Isles. A number of publications have arisen out of the Multiple Sclerosis work. We'd like to thank all involved for bringing the importance of Multiple Sclerosis research to our attention.

Why is Multiple Sclerosis more common in Orkney and Shetland?

High rates of Multiple Sclerosis in Orkney remain a mystery