Large scale Scots health study calls for volunteers

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Image Credit: © fizkes

by Frankie Macpherson

Thursday 26th January 2023

The University of Edinburgh are calling for volunteers to boost their ‘pivotal’ study into health across Scotland, using medical records and genetic data to investigate the cause of diseases and help inform the nation’s healthcare priorities.

Led by Generation Scotland which has been running since 2006, the new call for participants invites anyone resident in Scotland to answer questions about their medical history and lifestyle.

Alongside this background information, researchers are asking volunteers to provide a saliva sample for genetic analysis and give permission to share their future medical records to all researchers to follow their health over time.

Scientists say this will enable them to examine the causes of diseases to help understand Scotland’s urgent healthcare concerns and inform future health policies and medical treatments.

Professor Dame Anna Dominiczak, Chief Scientist (Health) for the Scottish government, the University of Glasgow’s Regius Professor of Medicine and Chair of the study’s Scientific Steering Committee, said:

“Generation Scotland has been pivotal in providing an evidence base for government policy since it launched in 2006.

“It is important that it should now expand as we enter a new period in our country, moving beyond the pandemic and starting to tackle new health challenges, including the issues presented by the cost-of-living crisis.”

Led by a team based at the University of Edinburgh, the study already has more than 24,000 people from 7,000 families involved, but is hoping to increase this figure by at least 20,000 to expand the work further.

Organisers from Generation Scotland say they want to encourage whole families in particular to join the study – from children as young as 12 to grandparents. This is the first time young people aged between 12 and 15 can join a study like this if a parent or guardian consents.

Director of Generation Scotland, Professor Cathie Sudlow explained that looking at a whole family’s health and wellbeing will contribute to a greater understanding how both genetics and shared living environments impact the lives of people in Scotland:

“By opening Generation Scotland to teenagers for the first time, we will develop a clearer understanding of their health and wellbeing. This is of particular importance following the disruption to young people’s lives caused by the pandemic. The online nature of the study also means anyone in Scotland – from Lerwick to Dumfries – can easily join.”

Following an online questionnaire, people joining the study are sent a ‘spit kit’ to provide a saliva sample which can undergo genetic analysis in a lab. By accessing medical records, the researchers can also analyse data about medications, vaccinations, prior and ongoing illnesses and hospital visits.

Another Edinburgh-led study previously used data from the 1936 Lothian Birth cohort to identify links between living in socially deprived areas and greater risk of frailty for older Scots which may help inform action on health inequalities.

Generation Scotland say the new study’s team may also access education, work and census data, but only with the participants’ permission. They explain that this will improve the knowledge base around social and economic influences on health and wellbeing in Scotland.

Reports from the Universities of Glasgow and Strathclyde published late last year revealed that while Scotland has a world-leading system for monitoring and researching health inequalities, a closer look at our most deprived areas is needed as some health inequalities have widened in recent years.

Experts from Generation Scotland say exploring wellbeing is important as it encompasses both mental and physical health and can help the team gain a better understanding of how people feel their lives are going.

Established with Scottish government support, Generation Scotland is based on a collaboration between Aberdeen, Dundee, Edinburgh and Glasgow universities alongside Public Health Scotland and NHS Grampian, NHS Greater Glasgow and Clyde, NHS Lothian, and NHS Tayside.

Now, its expansion is supported by Wellcome and Health Data Research UK. So far, participants in the study have contributed to research into many diseases including cancer, heart disease, diabetes, depression and dementia.

Previous findings have fed into the development of a £10 protein test that could help predict the risks of having a stroke or heart attack up to eight years early.

University of Edinburgh Professor Andrew Morris, Director of Health Data Research UK says increasing participation in Generation Scotland will help address key challenges in health and wellbeing for Scots:

“The pandemic demonstrated the key role that genomic and healthcare data can play in responding to societal challenges on a grand scale. By increasing participation in Generation Scotland, it should be possible for us to further understand the key drivers of health and well-being for people living in Scotland.”

Read more: Social deprivation linked to frailtyCan Scotland make health fairer?;Inside Scotland's widening health inequalitiesMoney matters for poverty & health

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