About the CSS Biobank
The COVID Symptom Study (CSS) Biobank is a study which aims understand the impact and effects of COVID-19 and how these may be linked with health conditions and other genetic and environmental factors. You can read about the study here.
The CSS Biobank is led by investigators and researchers from King’s College London.
You have received an email because you joined the CSS Biobank in 2020 or 2021.
No. The CSS Biobank is operated by King's College London and is entirely independent of ZOE. During 2020 and 2021, some ZOE COVID Symptom Study participants were invited to join the CSS Biobank, but ZOE has no role in its management.
Leeds East Research Ethics Committee has reviewed and approved the CSS Biobank research, with ethics approval renewed in 2025.
Current approval references:
Current approval references:
- Title of the Research Tissue Bank: COVID Symptom Study Biobank 2025
- REC reference: 25/YH/0160
- IRAS project ID: 360228
- Title of the Research Tissue Bank: COVID Symptom Study Biobank
- REC reference: 20/YH/0298
- IRAS project ID: 289172
Questionnaire FAQs
If you do not wish to participate in a questionnaire study, follow your unique invitation link and select 'No' to the first question asking if you are willing to complete the questionnaire. Make sure you click 'Next Page' and 'Submit' to ensure your response records and you do not receive further reminders.
This usually happens because the 'Submit' button was not pressed on the last page of the questionnaire, meaning it still appears incomplete. To fix this, follow your unique invitation link and click through to the end of the survey until you see the acknowledgement it has been submitted.
General questions
If you have changed your name, home address, phone number or email address, please let us know your new details through the 'Contact Us' webform, and we will update our records.
Alternatively, you can email us at enquiries@cssbiobank.com.
Taking Part in the CSS Biobank
The Co-Principal Investigators of the CSS Biobank are Professor Emma Duncan, Dr Claire Steves and Professor Sebastien Ourselin, of King’s College London. The main funding body supporting the CSS Biobank is the Chronic Disease Research Foundation (CDRF).
The CSS Management Group will oversee all of the activities of the CSS Biobank. The CSS Management Group consists of King’s College London researchers, ZOE Global Ltd representatives and participant representatives.
The CSS Management Group will oversee all of the activities of the CSS Biobank. The CSS Management Group consists of King’s College London researchers, ZOE Global Ltd representatives and participant representatives.
Participation in the CSS Biobank is currently by invitation only due to resource limitations. You are only able to join if you have received an invitation email through the COVID Symptom Study app.
We will invite participants to collect biological samples (e.g. blood and stool) from the comfort of their own home and post these back to us. We may also invite participants to complete questionnaires and take part in other tests and substudies.
We will also ask for participants' permission to link to their official health, education and environmental records so that we have the best possible data for our COVID-19 research.
More information about participation in the CSS Biobank is available in the Volunteer Information Sheet. This is available to view and download here.
We will also ask for participants' permission to link to their official health, education and environmental records so that we have the best possible data for our COVID-19 research.
More information about participation in the CSS Biobank is available in the Volunteer Information Sheet. This is available to view and download here.
One benefit of taking part is that your involvement will contribute towards the advancement of COVID-19 health research.
In addition, for some studies you may receive a set of clinically useful results which may help you and your GP identify health conditions.
In addition, for some studies you may receive a set of clinically useful results which may help you and your GP identify health conditions.
You should not experience any serious side effects while taking part in the CSS Biobank.
Depending on which samples and tests you complete, you may experience minor side effects, for example slight discomfort when collecting a blood sample.
Depending on which samples and tests you complete, you may experience minor side effects, for example slight discomfort when collecting a blood sample.
The tests we use are purely for research purposes, and so your participation in the CSS Biobank is not like a health check with your doctor. Some of our research tests however can be used to identify health conditions. We will send you results of clinically meaningful tests where possible, and we will advise you at the time of the data or sample collection when you may expect to receive results, if any.
Some of the tests we do are useful for research but currently have no clear medical meaning. This means that neither we, nor a GP, can interpret the results reliably. Other tests, such as genetic tests, are carried out in a research laboratory rather than a clinical laboratory therefore cannot be used to diagnose health-related issues. We may therefore not tell you the results of any of these tests.
Some of the tests we do are useful for research but currently have no clear medical meaning. This means that neither we, nor a GP, can interpret the results reliably. Other tests, such as genetic tests, are carried out in a research laboratory rather than a clinical laboratory therefore cannot be used to diagnose health-related issues. We may therefore not tell you the results of any of these tests.
We will store your clinical, genetic and questionnaire data in a secure electronic database for use in current and future projects. Your biological samples will be processed and stored at King’s College London laboratories or in one of our approved partner labs and bio-repositories. All the information we collect will be held securely in accordance with the General Data Protection Regulation 2018 and all samples will be stored in accordance with the Human Tissue Act 2004.
Researchers outside of King’s College London may request to use data held within the CSS Biobank. Our CSS Management Group strictly controls and manages access to data by external researchers or organisations in the UK or abroad.
Researchers outside of King’s College London may request to use data held within the CSS Biobank. Our CSS Management Group strictly controls and manages access to data by external researchers or organisations in the UK or abroad.
The CSS Biobank was reviewed and approved by the Yorkshire & The Humber - Leeds East Research Ethics Committee, REC reference number: 20/YH/0298
You are free to change the way you interact with the CSS Biobank at any time without giving any reason, and without your medical care or legal rights being affected. More information about how to change your participation status is available in the Volunteer Information Sheet, here.
Tech support
Generally there are a few things you can try that might work. We suggest the following options:
- Use a different computer/tablet
- Use a different internet browser
- Open a different internet browser e.g. Explorer, Mozilla Firefox, Google Chrome
- Copy and paste the link (URL) into the internet browser
- Delete browser cookies
This usually means that the link has already been used and registration has already been completed. The registration links we send to participants are for you only, and should not be shared with anyone else. Joining the CSS Biobank is currently by invitation only.
If someone else has used your link to sign up to the CSS Biobank, please get in touch with us through the 'Contact Us' webform and we will resolve this.
COVID-19 advice, resources and data
Current and upcoming guidance from the UK government including information about vaccination, travel and testing. Additional government advice is available here.
Scottish government advice is available here.
Welsh government advice is available here and here (Cymraeg)
Northern Ireland government advice is available here.
Scottish government advice is available here.
Welsh government advice is available here and here (Cymraeg)
Northern Ireland government advice is available here.
Your COVID Recovery is an NHS website that helps you to understand what has happened, what you might expect as part of your recovery, and when to seek help.
COVID infection & vaccination rates in the UK today are here
Health record linkage
‘Data linkage’ is when an organisation accurately, securely and confidentially collects information from official records. It is an efficient way of improving the quality and volume of the data we use in our research with minimal burden to participants.
We now know that COVID-19 affected people very differently. While some individuals experienced mild or no symptoms at all, others became very ill and required hospital treatment.
We want to understand the impact and effects of COVID-19 long-term and how these may be linked with health conditions and other genetic and environmental factors.
Linking to data held in official records is important as good research needs the highest quality data possible. Data linkage allows us to access large volumes of high-quality data for longterm COVID-19 research, with minimal burden on participants.
We now know that COVID-19 affected people very differently. While some individuals experienced mild or no symptoms at all, others became very ill and required hospital treatment.
We want to understand the impact and effects of COVID-19 long-term and how these may be linked with health conditions and other genetic and environmental factors.
Linking to data held in official records is important as good research needs the highest quality data possible. Data linkage allows us to access large volumes of high-quality data for longterm COVID-19 research, with minimal burden on participants.
We will use a secure platform called the UK LLC to link to official health records.
The UK Longitudinal Linkage Collaboration (UK LLC) works with the NHS across the UK to safely and confidentially link health records to CSS Biobank study data. The study team sends personal details separately from study information, and the NHS uses these details only to locate the correct health records. Personal identifiers are then removed.
De-identified health data is securely transferred to Swansea University’s Secure eResearch Platform (SeRP), where it is linked to CSS Biobank data using an encrypted study number. The linked dataset is stored in a Trusted Research Environment (TRE), where approved researchers can analyse the data but cannot remove or identify individuals.
You can read more about the UK LLC at: https://ukllc.ac.uk/
The UK Longitudinal Linkage Collaboration (UK LLC) works with the NHS across the UK to safely and confidentially link health records to CSS Biobank study data. The study team sends personal details separately from study information, and the NHS uses these details only to locate the correct health records. Personal identifiers are then removed.
De-identified health data is securely transferred to Swansea University’s Secure eResearch Platform (SeRP), where it is linked to CSS Biobank data using an encrypted study number. The linked dataset is stored in a Trusted Research Environment (TRE), where approved researchers can analyse the data but cannot remove or identify individuals.
You can read more about the UK LLC at: https://ukllc.ac.uk/
No, the CSS Biobank team and researchers will not see your identifiable health records.
Your personal details are sent securely to the NHS only so they can find the correct records. Before anything is shared back, the NHS removes your name, NHS number, date of birth and all other identifiers.
The remaining de-identified health information is then linked to your study data inside a highly secure Trusted Research Environment (TRE).
Approved researchers can only access this de-identified data within the TRE. They cannot download, copy, or identify you from the information.
Your personal details are sent securely to the NHS only so they can find the correct records. Before anything is shared back, the NHS removes your name, NHS number, date of birth and all other identifiers.
The remaining de-identified health information is then linked to your study data inside a highly secure Trusted Research Environment (TRE).
Approved researchers can only access this de-identified data within the TRE. They cannot download, copy, or identify you from the information.
If you have given us permission to access your health records when joining the CSS Biobank but have opted out of the NHS system for sharing data with researchers, then we will not be able to access your records.
You can opt out, or opt back in again, at any time. Information can be found here.
You can opt out, or opt back in again, at any time. Information can be found here.
Case Study 1 - Reducing participant burden and improving research methods
Mrs Jones is a participant in the CSS Biobank. One morning she receives an email asking her to complete an online questionnaire from the CSS Biobank about previous vaccinations she has received throughout her life, so that researchers can investigate the effect of vaccination history and COVID-19 experience. Like most people, Mrs Jones had not kept notes on her vaccinations throughout her life.
With data linkage, we would be able to see when exactly Mrs Jones received vaccinations through the NHS much more easily and accurately. This would give us better quality data for our research study, and without needing to disturb Mrs Jones
Case Study 2 - Linking COVID-19 symptoms and hospital records to understand outcomes
We know that COVID-19 affected people very differently. While some individuals experienced mild or no symptoms at all, others became very ill and required hospital treatment.
By linking individuals’ historical COVID-19 symptom data with hospital records of their treatment and outcomes, researchers can build a clearer understanding of the long-term impacts of the virus and identify factors associated with severe cases.
This knowledge can help improve care for those at higher risk of complications and support early intervention strategies in the event of future outbreaks.
Case Study 3- Linking to environmental data for COVID-19 research
We know that COVID-19 affected the lungs. In severe cases, individuals required invasive treatment in hospital to support their breathing, while other people who caught COVID-19 experienced breathing difficulties and other respiratory issues for weeks and even months after infection.
One factor that could have affected how an individual’s lungs respond to COVID-19 could be exposure to local air pollution levels. By linking individuals’ COVID-19 experience and outcomes with local air pollution levels, researchers could understand if there is a connection between the two and work out how to mitigate any increased risk in future
Mrs Jones is a participant in the CSS Biobank. One morning she receives an email asking her to complete an online questionnaire from the CSS Biobank about previous vaccinations she has received throughout her life, so that researchers can investigate the effect of vaccination history and COVID-19 experience. Like most people, Mrs Jones had not kept notes on her vaccinations throughout her life.
With data linkage, we would be able to see when exactly Mrs Jones received vaccinations through the NHS much more easily and accurately. This would give us better quality data for our research study, and without needing to disturb Mrs Jones
Case Study 2 - Linking COVID-19 symptoms and hospital records to understand outcomes
We know that COVID-19 affected people very differently. While some individuals experienced mild or no symptoms at all, others became very ill and required hospital treatment.
By linking individuals’ historical COVID-19 symptom data with hospital records of their treatment and outcomes, researchers can build a clearer understanding of the long-term impacts of the virus and identify factors associated with severe cases.
This knowledge can help improve care for those at higher risk of complications and support early intervention strategies in the event of future outbreaks.
Case Study 3- Linking to environmental data for COVID-19 research
We know that COVID-19 affected the lungs. In severe cases, individuals required invasive treatment in hospital to support their breathing, while other people who caught COVID-19 experienced breathing difficulties and other respiratory issues for weeks and even months after infection.
One factor that could have affected how an individual’s lungs respond to COVID-19 could be exposure to local air pollution levels. By linking individuals’ COVID-19 experience and outcomes with local air pollution levels, researchers could understand if there is a connection between the two and work out how to mitigate any increased risk in future