1. What we will do with your results

Positive swab test results and  relevant personal data (including name, contact details, postcode and ethnicity) will be shared with the relevant public health bodies for referral to national systems (Public Health England for referral to the NHS Test and Trace system; Public Health Wales for referral to the NHS Wales Test, Trace, Protect system; the Public Health Agency for referral to the HSC Northern Ireland's Test, Trace, Protect programme; and Public Health Scotland for referral to the NHS Scotland Test and Protect system). In England, from November 2020 all test results (positive, negative, and void) will be shared.

We will link information from you in this study to data from the NHS and ONS (and equivalent national databases in Wales, Northern Ireland and Scotland) about your health status, for example, whether you have visited hospital or a GP or had another test for the coronavirus (COVID-19). This is to try to work out what we need to do to keep the NHS going through this pandemic. We will do this for one year after your last visit.

We will only use names and date of birth where this is absolutely necessary to link to your NHS and ONS records. We will use your postcode to try to work out how COVID-19 is spreading around the country. At the point when they are collected in your home, all samples and study records will be identified only by a code for your household and each person in it joining the study, together with month and year of birth and not the actual date of birth.

Information that can identify you will only be held by the ONS and IQVIA for the purposes of the study.

Responsible members of the University of Oxford may be given access to data for monitoring and/or audit of the study, to ensure that the research is complying with applicable regulations.

Please note that if you signed up to take part in the study before 21 July 2020 there has been a small change to the way in which information from participants in the COVID-19 Infection Survey is to be used by the ONS. The ONS intends to link data from the survey to other survey and administrative data sets it holds. This will be beneficial in providing more in-depth analysis, which in turn will enable us to better understand the impact and nature of COVID-19 and answer critical questions to assist public health authorities and policy makers in better responding to the pandemic in the months ahead. This analysis is not part of the Infection Survey itself. Such linkage will continue for as long as there is value for statistical research and analysis.

The ONS may provide access to this data to accredited researchers for accredited research purposes via accredited processing environments, where it is lawful and ethical to do so, and where the research is considered to be in the public good. It will not be possible to identify individuals from this data. Data will only be used for statistical research and analysis purposes and will not be shared with anyone else (other than access by accredited researchers).

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2. How we will use your nose and throat swab and blood sample

Your nose and throat swab will be tested at one of the Lighthouse Laboratories using the standard test used in the national testing programmes to find out if someone currently has the coronavirus (COVID-19), even if they do not have symptoms.

Your blood sample will be tested by scientists at the University of Oxford. They will look for the levels of antibodies against COVID-19 in your blood.

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3. What we will do with your samples after the study

The nose and throat swab will be destroyed once the test is done.

We would like to keep any blood that is not used immediately for the antibody test for future research, including for future tests relating to the coronavirus (COVID-19). You do not have to agree to this. Your blood sample will either be used up or destroyed after five years.

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4. Receiving your results

We  will send you your results by letter. Parents and carers will get results for their children. We are working hard on being able to text or email you your results if you are happy to give us your mobile number or email address.

It will typically take at least a week to get your swab results back. The COVID-19 Infection Survey is a research study, not a testing programme. Our swab tests are mostly with people without COVID-19 symptoms, so these take lower priority than tests from the national testing programmes and clinical service.

In the research study, it takes a day to get the swab to the labs, then often three to four days to do the tests. Results are sent back every weekday morning from the labs to the research study. Once results come back, they are matched to participants via their barcode and then letters are sent.

It is very important that if you develop symptoms of COVID-19 you follow the guidance on self-isolation relevant to where you live. Even if you have had a recent test done in this survey and have developed symptoms, do not wait for its results before self-isolating. If you have not had a recent test in the survey, please follow the guidance on getting a test for your area.

It typically takes at least two weeks to get your blood results back.

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5. What if your swab test result is positive

If one of your nose and throat swabs tests positive, as soon as we receive it back from the labs we pass the result onto the national tracing programme (NHS Test and Trace in England; NHS Wales Test, Trace, Protect in Wales; the Test and Contact Tracing programme in Northern Ireland; and the Test and Protect system in Scotland).

  • They will then contact you.

  • This will almost certainly be before you get this positive result back from the study. If you are currently having weekly follow-up, the call may even come before you get a negative or failed result back from your previous test.because of the timelines described in '4. Receiving your results'. Please check the dates that are printed on all the result letters.

  • Please engage fully with the national tracing programme and follow the advice provided, for example, on self-isolation.

It is important to know that a lot of people who test positive for COVID-19 do not have any symptoms - around half the people in our study. This does not mean the test is wrong. The test we use has a false-positive rate of under 0.005%, meaning fewer than 1 in 20,000 positives will be wrong. People without symptoms can still pass the virus on, so it is very important to follow the advice from the tracing programme.

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6. Testing positive repeatedly in the study

Some people can carry on being positive on a throat and nose swab for several weeks after they first test positive. This does not necessarily mean that they are still infectious.

New update to regulations in England

From Wednesday 2 December the self-isolation regulations changed in England - see here - these now exempt participants of ethically approved coronavirus research (like this study) from multiple periods of self-isolation if they have repeated positive swab tests within three months (90 days) of their initial positive test.

If you test positive repeatedly in the survey and are contacted by the contact tracing program, providing that you have already completed one period of self-isolation and providing you have not developed any further symptoms, you should tell the contract tracing programme that you have already self-isolated.

The original regulations in England were developed for testing people with symptoms, and also assuming that people would clear the infection quite quickly without being tested again. As above, we know now that lots of people test positive without symptoms and also that people can carry on being positive for much longer than was thought originally. The experience of participants in our study has directly informed the change to guidance, led by our colleagues at the Department of Health and Social Care.

Regulations in Wales, Northern Ireland and Scotland

In Scotland, people usually only need to complete one period of self-isolation from their first positive test -- they do not need to self-isolate every time. People only need to isolate again if they test positive three months later. In Northern Ireland and Wales, please contact local public health teams.

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7. Informing your General Practitioner (GP) or family doctor

If you joined the study before 28 September 2020, we will have told your GP that you are in this study, and we will have sent all the results from tests on your nose and throat swabs done before this back to them. GPs will not be told about anyone joining after 28 September, or about any tests done after 28 September.

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8. How we will use your data

The ONS will use the data from your nose and throat swab and blood sample, together with other data sources available to the ONS. We will get data on how much you have used the NHS from NHS Digital. NHS Digital is the NHS body that looks after all NHS data. We particularly want to find out how having had the coronavirus (COVID-19) infection in the past affects how much you need to use the NHS in future. This is to try to work out what we need to do to keep the NHS going through this pandemic.

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9. Why your antibody result might be negative after a COVID-19 vaccination

This can happen because, as individuals, we all respond differently to vaccination. Our bodies take different times to develop antibodies and some people do not develop antibodies to the threshold levels at which the antibody tests register a positive result. These differences between individuals and how we respond are the reasons for the survey, and what our scientists are trying to understand about what they mean for controlling the spread of the virus.

Please remember that whatever your test results, now or in the future, if you develop COVID-19 symptoms, it is very important that you follow the current government guidance and do not wait for the results of any tests done in this survey.

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10. A negative antibody result after vaccination does not mean the vaccine has not worked

A negative antibody result could have happened because your body has not yet had the time to develop the antibodies. Alternatively, it could be that your body has not developed enough antibodies to meet the threshold at which the tests register a positive antibody response, but that your antibody levels have still risen.

Antibodies are only part of the way that our bodies fight infection. There are other parts of the immune system, for example, cells called T-cells, which also fight infection but we are not measuring these because they require a lot more blood and very fast processing that is not possible in the survey. Those without a detectable antibody response may still be protected against getting COVID-19.

As individuals, we all respond differently and it is the impact of these differences that our scientists are trying to understand.

It is really important to understand that even in the trials, the vaccines did not stop people getting COVID-19 but they did stop almost all hospitalisations and deaths. We already know that some people will get COVID-19 again and they may still be able to transmit the virus to others.

Please remember that whatever your test results, now or in the future, if you develop COVID-19 symptoms, it is very important that you follow the current government guidance and do not wait for the results of any tests done in this survey.

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