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.

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.

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.

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.

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.

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.

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.

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.

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.

‘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 affects people very differently. While some individuals may experience mild or no symptoms at all, others may become very ill and require hospital treatment. By linking individuals’ COVID-19 symptoms and study data with hospital records of their treatment and outcomes, researchers can build a better picture of who is likely to experience severe COVID-19. This could help us predict who is likely to need hospital treatment for a COVID-19 infection and encourage these individuals to seek clinical care sooner if they develop symptoms of infection.

We will use a secure platform called OpenSAFELY to link to official health records.

OpenSAFELY was developed by scientists and doctors at Oxford University during the COVID-19 pandemic. OpenSAFELY works with the two major providers of software used by GP practices to allow approved researchers restricted, safe and confidential access to health records within a secure environment. OpenSAFELY is very transparent and all platform activity is publicly logged, and all code for data management and analysis is shared for scientific review. Records are linked using NHS numbers.

You can read more about OpenSAFELY here.

No, OpenSAFELY does not allow researchers to see individual records e.g., to see what was discussed with your GP on a certain date and time. Researchers can only access summary information that is combined into tables and figures.

Furthermore, OpenSAFELY never lets researchers download patient data and all the work to link to the data is carried out within a restricted area on OpenSAFELY servers.

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.

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

If you are still unable to access the link, you can contact us through the 'Contact Us' webform and we will try to help.

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.

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.

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