Our Studies

The Scottish Family Health Study is an intensively phenotyped, family-based cohort for the study of the genetic basis of common complex diseases and response to treatments. Recruitment began early in 2006 and was completed in 2011. The cohort includes just over 24,000 participants, with most consenting to record linkage and recontact.

Each participant gave blood or saliva samples (for processing, biochemistry and cryopreservation) and a urine sample.  The blood or saliva samples were processed to DNA and extensive genotyping was carried out on over 20,000 participants by 2015.

Data Dictionary

To help you design your study, we've made a data dictionary for the Scottish Family Health Study available.

Scottish Family Health Study Data Dictionary

Study Methodology

Please see the following links for a description of the methods used for data collection:

Cohort Profile: Generation Scotland: Scottish Family Health Study (GS:SFHS). The study, its participants and their potential for genetic research on health and illness

Cohort Profile: Stratifying Resilience and Depression Longitudinally (STRADL): a questionnaire follow-up of Generation Scotland: Scottish Family Health Study (GS:SFHS)

Generation Scotland: an update on Scotland’s longitudinal family health study  

Clinical and Questionnaire Data  

Data overview:  

Pre-clinic questionnaire

• Demographic details
• Occupational history
• Lifestyle – smoking, alcohol, diet and exercise
• Personal and family medical history, age at menarche and menopause
• Rose angina questionnaire
• Musculoskeletal questions – including Chronic Pain Grade, history of fractures
• Current drug history, including prescribed and non-prescribed medications, HRT use

Physical measurements

• Height, weight, waist-hip ratio
• Blood pressure x 2 (Omron BP Monitor), resting pulse
• Ankle brachial pressure index (ABPI)
• Spirometry - FEV1, FVC, FEF
• ECG
• Bioimpedance (% body fat)

Cognitive function measurements

• Eysenck Personality Questionnaire Revised Short Form
• Logical Memory from the Wechsler Memory Scale III
• Digit Symbol from the Wechsler Adult Intelligence Scale III
• Verbal Fluency
• Mill Hill Vocabulary Scale
• General Health Questionnaire – 28

Mental health measurements

• SCID Brief screening interview for major depression
• SPQ-B Personality Questionnaire
• MDQ Mood Questionnaire

Biochemistry measures

• Urea
• Sodium
• Creatinine
• Glucose
• Potassium
• Total cholesterol
• HDL cholesterol

Questionnaires

 SFHS Clinical Record Form (74.63 KB PDF)

 SFHS Pre-Clinical Questionnaire - Phase 1 (144.46 KB PDF)

 SFHS Pre-Clinical Questionnaire - Phase 2 (592.41 KB PDF)

Study Documentation

 SFHS Patient Information Leaflet (67.35 KB PDF)

 SFHS Consent Form (28.89 KB PDF)

Data from the NextGenScot recruitment phase will be available to researchers soon.

The Loneliness in the Digital World study was launched on the 10th of April 2024.

This study aims to recruit 200 young people ages 12–15 to join the study. The study explores how various types of social interaction, both positive and negative, in-person and online, impact state loneliness (i.e. a more temporary and situational experience of loneliness, which specific events or circumstances may influence) and mental health in adolescents.

Study Methodology

The study uses an Ecological Momentary Assessment design to assess offline/online social acceptance and rejection in young people and examine how different types of social interaction affect state loneliness, emotions and broader well-being. The study is also co-produced with a group of young people. Our Young People Advisory Group (YPAG) helped the researchers design and shape the research question and design.

For more information, please go to our website.

Genetic Health in the 21st Century is a resource of control DNA and genetic and phenotypic information. The study includes nearly 2,000 consenting individuals from 6 different locations across Scotland. It is designed to help establish the genetic profile of a control population living in Scotland in relation to health and disease. Recruitment took place in Aberdeen, Banff, Dundee, Edinburgh, Glasgow and Peterhead.

Study Methodology

DNA was extracted from all blood samples and archive and working stocks prepared. Purified blood cells were stored and can be used to make lymphoblastoid cell lines.

Data Overview

 21CGH Questionnaire (116.62 KB PDF)

Study Documentation

 21CGH Patient Information Leaflet (52.79 KB PDF)

 21CGH Consent Form (47.73 KB PDF)

We collected human control DNA samples and plasma from blood donors attending sessions at the Scottish National Blood Transfusion Service, in more than 140 locations throughout Scotland.

Recruitment took place during 2008 and the collection contains almost 5,000 samples with accompanying data.

Study Methodology

Please see the following reference for a description of the methods used:

• Generation Scotland: Donor DNA Databank; A control DNA resource

The purpose of of the Donor DNA Databank is to provide a long term, well characterised resource of human DNA control samples. 'Case' samples are unique to each disease study, but the same control samples can be used across many studies if appropriately collected and characterised. The Donor DNA Databank provides access to a collection of well-maintained stocks of control DNA obtained with consent from the Scottish population. Donors answered a short questionnaire and allowed a sample of their blood and a filter, which would otherwise be discarded, to be used by the project. Questionnaire data was entered into the databank using Optical Mark Read (OMR) technology. The collected data, DNA and plasma samples were unlinked and fully anonymised 28 days after collection.

Study Documentation

 3D Patient Information Leaflet (83.08 KB PDF)

 3D Consent Form (48.36 KB PDF)

Data Overview

 3D Questionnaire (57.42 KB PDF)

• Age group, Sex
• Cultural Background
• Participant and Parental Scottish Region or Country of Origin
• Grandparental Origin (Scotland/Other)
• SNBTS donor inclusion criteria

Overview of the project, including the ethnic and geographical distribution of the cohort:

 3D Overview (4.95 MB PDF)

Donor DNA databank data can be accessed through the Edinburgh Datashare website.

Over 25,000 people have taken part in either CovidLife, TeenCovidLife or RuralCovidLife. Their support is helping us to begin understanding health and well-being. Data are available for research use.

Our CovidLife surveys launched in April 2020, over different time periods and under different UK regulations. If you'd like to take a look at when each survey was launched and how long it ran for, take a look at our timeline.

CovidLife Survey Timeline 

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The CovidLife survey was launched on 17th April 2020 in response to the coronavirus (COVID-19) pandemic. In our baseline survey, we asked ~18,000 people a series of questions about how COVID-19 measures had been affecting them. Our second survey was completed by ~11,000 volunteers and our third survey y ~10,000 volunteers.

We invited people over the age of 18 and living in the UK to take part. Our volunteers included over 13,000 members of the general public and over 4,000 Generation Scotland participants. They were asked questions about the impact of the pandemic on their health, well-being, social and work life and education. The survey was conducted online, using Qualtrics.

Data Dictionary

Questionnaires

If you would like to reuse any of the questions from our survey, please let us know. Please also contact us if you would like a Qualtrics version. You can email us at access@generationscotland.org

Reports

Initial results of CovidLife survey released

The second and third CovidLife surveys have been conducted and data is available for research use. 

Data Note

After completion of the surveys, we created a data note detailing all the information available in our CovidLife surveys. You can read it in the link below.

CovidLife: a resource to understand mental health, well-being and behaviour during the COVID-19 pandemic in the UK

Data Access

To gain access to CovidLife data, please complete the form below and pass this on to the Generation Scotland team at access@generationscotland.org.

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The TeenCovidLife survey was launched on 22nd May 2020. In our baseline survey, we asked ~5,500 young people a series of questions about how COVID-19 measures had been affecting them. Our second survey was completed by ~3,000 new and previous volunteers and out third survey by ~700 volunteers.

We invited young people aged 12-17 to get involved. They were asked questions about the impact of the pandemic on their school and home life, as well as their overall health and well-being. The survey was conducted online, using Qualtrics.

Data Dictionary

Questionnaires

If you would like to reuse any of the questions from our survey, please let us know. Please also contact us if you would like a Qualtrics version. You can email us at access@generationscotland.org.

Reports

TeenCovidLife: The results are in

TeenCovidLife: Survey 2 Results

We hope to invite young people to TeenCovidLife 3 in early summer.  

Data Note

After completion of the surveys, we created a data note detailing all the information available in our TeenCovidLife surveys. You can read it in the link below.

TeenCovidLife: a resource to understand the impact of the COVID-19 pandemic on adolescents in Scotland

Data Access

To gain access to TeenCovidLife data, please complete the form below and pass this on to the Generation Scotland team at access@generationscotland.org.

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The RuralCovidLife survey was launched on 14th October 2020. In our baseline survey, we asked ~3,000 rural Scottish volunteers, aged 16 and over, a series of questions about how COVID-19 measures had been affecting them.  The questions were tailored and designed by people from rural communities. We did this to make sure we asked about topics relevant to our volunteers.

Data Dictionary

Questionnaire

If you would like to reuse any of the questions from our survey, please let us know. Please also contact us if you would like a Qualtrics version. You can email us at access@generationscotland.org.

Report

We have also published a report on the initial survey findings, which can be found in the link below:

Rural voices heard as first RuralCovidLife results published

This is the first in a series of surveys. Initial RuralCovidLife data is available for research use. 

Data Note

After completion of the survey, we created a data note detailing all the information available in RuralCovidLife. You can read it in the link below.

RuralCovidLife: Study protocol and description of the data

Data Access

To gain access to RuralCovidLife data, please complete the form below and pass this on to the Generation Scotland team at access@generationscotland.org.

The Stratifying Resilience and Depression Longitudinally (STRADL) substudy recruited from the existing GS cohort to subtype major depressive disorder (MDD), using detailed clinical, cognitive and brain imaging assessments. From 2015 to 2017, 9905 GS participants completed a remote depression-focused questionnaire (including psychological resilience, coping style and response to psychological distress) and a subset (n=1189) attended a face-to-face assessment to conduct cognitive testing, multimodal MRI of brain scans (n=1085) and further bio-sample collection.

Cohort profile for the STratifying Resilience and Depression Longitudinally (STRADL) study: A depression-focused investigation of Generation Scotland, using detailed clinical, cognitive, and neuroimaging assessments

Data Dictionaries

The DOLORisk substudy used GS to study neuropathic pain (NP). The study received responses to a survey regarding presence or absence of chronic pain and NP from 7,238 members of the GS cohort with a follow-up repeat survey (n=5292 responses) after 18 months.

DOLORisk: study protocol for a multi-centre observational study to understand the risk factors and determinants of neuropathic pain