Generation Scotland

Generation Scotland was formally proposed in 2001 (Royal Society of Edinburgh meeting). SHEFC Proof-of-Concept funding for ‘21^st Century Genetic Health, 21CGH’ (2003-2006) established the ethical and regulatory framework and piloted recruitment of a Scottish ancestry cohort (~2,000). The Scottish Government Chief Scientist Office Genetics Healthcare Initiative funded the Scottish Family Health Study cohort (2006-2011).

Generation Scotland is a Scotland-wide family-based study which recruited adults (18+) through the Scottish GP Research Network. Baseline data was collected at recruitment (2006-2011). Volunteers gave broad consent to genetic studies, linkage to medical records and willingness to be recontacted for future studies. They attended a clinic in Greater Glasgow, Tayside or Aberdeen with at least one first degree relative. Additional family members were recruited through these initial contacts. Retrospective and prospective linkage to routine Scottish medical records converted the study from cross-sectional to longitudinal.

The main cohort comprises 24,000 volunteers in 7,000 family groups. However the Research Tissue Bank approval also covers a) 21CGH and b) ~5,000 Scottish National Blood Transfusion donors (fully anonymised, minimal phenotyping, no recontact).

Volunteers completed an extensive paper questionnaire of past medical history (own and family), general health, mental health, personality, mood and memory. Anthropometric measures were made and samples of blood and urine collected at the clinic visit. Volunteers have been recontacted at various times since to take part in research studies and/or complete additional questionnaires.

Generation Scotland has supported >300 externally-led research studies. The Wellcome Trust ‘Stratifying Resilience and Depression Longitudinally’ study was fully embedded in Generation Scotland and included repeat questionnaires (~9,600, 45%), clinic studies and repeat sampling (~5,000) , brain imaging (~1,200) and genome wide methylation (~10,000).

Generation Scotland has also conducted CovidLife surveys to evaluate the health and wellbeing, social, employment and economic impact of COVID-19 mitigation measures on the cohort and on the general UK population.

Sample design

Generation Scotland currently comprises three cohorts:

GS:3D: ~5,000 adult blood transfusion donors collected though the Scotland-wide network of blood donor services, with minimal phenotying (age, sex, donor site), providing a fully anonymised control sample.

21CGH: ~2,000 adults who have at least 3 grandparents born in Scotland, proving an ancestry reference panel. A subset of the 21CGH panel are also members of the core SFHS cohort.

SFHS (Scottish Family Health Study): ~24,000 adults in 7,000 family groups recruited between 2006-2011 through the Scottish research network of General Practitioners. Volunteers completed an extensive paper questionnaire of past medical history (own and family), general health, mental health, personality, mood and memory. They brought their completed questionnaire to a research clinic in Greater Glasgow, Tayside or Aberdeen where various anthropometric measures were made and samples of blood and urine collected. These were banked for use in genetic and omic studies.

CovidLife Survey: A series of online surveys of the UK population from 18 and up. The initial survey had over 18,000 respondents with 5,000 already in the Generation Scotland cohort.

TeenCovidLife Survey: An online survey with 5,500 respondents of 12 to 17 year olds across Scotland examining the impact of the government’s Covid-19 measures on their health and wellbeing.

RuralCovidLife Survey: An online survey of 3,000 Scottish rural volunteers aged 16 and over. The questionnaire was designed by people living and working in rural Scotland and measured how Covid-19 measures were affecting Scottish rural communities.

Sample boosts

The Wellcome Trust ‘Stratifying Resilience and Depression Longitudinally’ study was fully embedded in Generation Scotland and included repeat questionnaires (~9,600, 45%), clinic studies and repeat sampling (~5,000) , brain imaging (~1,200) and genome wide methylation (~10,000). Multiple other studies have added questionnaire or omic data.

Linked data

The following linked data is currently available:

SMR00 Out-patients

SMR01 In-patients

SMR02 Maternity

SMR06 Cancer Registry

SMR04 Mental Health

SMR11 Neo-natal

Died Mortality (NRS)

PIS Prescriptions

MIDAS NHS Dentistry

Lab SCI Store lab tests

GP Primary care data

Management and funding

Generation Scotland is managed by the GS Management Team, University of Edinburgh. The study has been funded as follows:

SHEFC: £1.96M 21CGH award
CSO: £7M SFHS award
MRC HGU: genome wide genotyping (GWAS) of 20,000.
Wellcome Trust: £4.8M GS-embedded STRADL study (2014-2020)
Wellcome Trust: £5.1M LPS award for NextGenScot to double the cohort size and extend age range to 12 and older (2019-2024).

Accessing the data

For more information on the access arrangements for the Generation Scotland cohorts, please see the following webpages:

Access to Generation Scotland data is subject to the EoSREC Research Tissue Bank approval 20/ES/0021 and subsequent substantial amendments and review under the Generation Scotland access approval mechanism. Cost recovery charges will be made to academic users and full costs to commercial entities. Find out more on the Generation Scotland website.

Strategic collaborations

Generation Scotland is registered with the HDR UK Gateway Alliance (HDRUK Innovation Gateway | Homepage (healthdatagateway.org) and the HDR UK International Covid-19 Data Alliance (ICODA) (International COVID-19 Data Alliance – HDR UK).

Generation Scotland is also a participating member of:

The National Core Studies Mental Health research study (Mental Health | COVID-19 Longitudinal Health and Wellbeing National Core Study – UCL – University College London)
The MRC/NIHR Convalescence study (Convalescence Long-COVID Study | COVID-19 Longitudinal Health and Wellbeing National Core Study – UCL – University College London)
The UK Longitudinal Linkage Collaboration (UK LLC | UK Longitudinal Linkage Collaboration)
The COVIDMENT alliance of Nordic countries (Mental Morbidity trajectories in COVID-19 – COVIDMENT)

Cohort profile

Smith BH, Campbell A, Linksted P, et al. Cohort Profile: Generation Scotland: Scottish Family Health Study (GS:SFHS). The study, its participants and their potential for genetic research on health and illness. Int J Epidemiol. 2013;42(3):689-700.
doi:10.1093/ije/dys084

Fawns-Ritchie C, Altschul DM, Campbell A et al. CovidLife: a resource to understand mental health, well-being and behaviour during the COVID-19 pandemic in the UK [version 1; peer review: 1 approved]. Wellcome Open Res 2021, 6:176
doi:10.12688/wellcomeopenres.16987.1

Huggins CF, Fawns-Ritchie C, Altschul DM et al. TeenCovidLife: a resource to understand the impact of the COVID-19 pandemic on adolescents in Scotland [version 1; peer review: awaiting peer review]. Wellcome Open Res 2021, 6:277
doi:10.12688/wellcomeopenres.17252.1

Stevenson AJ, Huggins CF, Forbes A et al. RuralCovidLife: Study protocol and description of the data [version 1; peer review: awaiting peer review]. Wellcome Open Res 2021, 6:317
doi:10.12688/wellcomeopenres.17325.1

Video: Introducing Generation Scotland

Visit the study website

www.generationscotland.org