6 October 2021

The NHS has launched a national COVID Cancer Antibody Survey to assess antibody responses to the COVID-19 vaccines among cancer patients and is calling on cancer patients to sign up now.

You can sign up here: https://covidcancersurvey.uk/

Vaccination is an important strategy to protect society from the effects of COVID-19, but there is emerging evidence that a small number of cancer patients may have lower levels of antibody response than the general population. We don’t yet fully understand what lower levels of antibodies mean in terms of outcomes, but it may mean some people with cancer are not as protected from COVID-19.

The survey is open to people aged 18 or over living in England who have either been diagnosed with cancer in the last year or are currently receiving cancer treatment. Participants will be sent a finger-prick blood test that looks for antibodies against COVID-19 in the blood. It will be sent in the post and comes with everything needed to complete and return the test.

By signing up for this survey, you can help to develop our understanding of what antibody levels mean for people with cancer and help us to provide the best treatment, care and support for patients, as well as finding out about your own antibody levels.  

You’ll fill in a short form with your details before being automatically redirected through to the NHS Test & Trace antibody test booking page where you’ll be able to book your free test. There are 10,000 places on this survey and the NHS expects to be recruiting participants for the next two to three months.

You need to visit https://covidcancersurvey.uk/ to sign up to the survey before ordering your antibody test.

We are aware that, once you have completed registration on covidcancersurvey.uk and have been directed onto the gov.uk antibody test booking service, one of the questions that website asks you is to confirm your employment status. Please ignore the text underneath this question, which asks you not to continue if you are not working – you do qualify for an antibody test, regardless of your employment status. Simply answer this question and click ‘continue’ – you will still be able to book your test. We’re assured that the website is being updated imminently, when this message will be removed.

 

For more information, please use the ‘contact us’ section of the survey website: https://covidcancersurvey.uk/contact/

National COVID cancer antibody survey – Q&A

Why is the survey being done?

The National COVID cancer antibody survey is being performed to understand the protection provided by antibodies generated following COVID-19 infection and vaccination in cancer patients and the general public. It will also assess how the antibody levels are affected by different types of cancer and also cancer treatments.  

Am I allowed to repeat my test?

You are only allowed to perform the test once. However, if your initial test was void, you are welcome to request a second test.

How does the survey link into other studies on antibody responses in cancer patients?

There are a number of antibody studies involving cancer patients. These all provide important information to understand the protection provided by antibodies generated following COVID-19 infection and vaccination in cancer patients and the general public. The National COVID cancer antibody survey is working closely alongside other antibody, vaccination, and anti-viral studies to understand the best way to protect, safeguard and monitor individuals with a diagnosis of cancer.

How does the survey link into the wider attempts to control COVID-19?

The survey is one of the first studies carried out with vulnerable/immunosuppressed groups to understand the protection provided by antibodies generated following COVID-19 infection and vaccination in cancer patients and the general public. Information and insights gained will link into wider attempts to control COVID-19.

 

National COVID cancer antibody survey logistics

How long will it be before I get my test result?

The processing time of the test depends on how many people are using the service on that particular day. It currently takes between 1-3 weeks for your antibody test to be dispatched to you and it takes 1-3 weeks to process this test once it is received by Track and Trace. 

How can I request a test?

You can request your test directly at www.covidcancersurvey.uk. This will take you to a registration page where you can find more information about the test. Once you have entered your details, you will then be automatically directed to the gov.uk Test and Trace antibody testing site where you can request the antibody home testing kit. On the gov.uk website, please confirm that you are taking part in the ‘National COVID cancer survey’ from the options list when you are asked ‘are you taking part in an antibody survey or study?’.

What does the test involve?

The test is a home antibody testing service. It involves a finger prick blood test. You are required to collect 10 drops of blood into a tube and send it back to Test and Trace laboratories.

What are the risks?

The risks of the procedure are minimal. You can find more information at https://www.gov.uk/register-coronavirus-antibody-test. The risks to be aware of are of discomfort, infections and bleeding that is slow to clot. It is important that you follow all instructions supplied to you to reduce the chances of these things happening.

Who can take part?

The National COVID cancer antibody survey is open to individuals who are over 18 years old with a diagnosis of cancer within the last year OR anyone who is on tablet/intravenous treatments for their cancer. It is also open to anyone who is receiving radiotherapy.

I have a chronic cancer and I’m in remission at the moment. Can I take part?

The National COVID cancer antibody survey is open to individuals who are over 18 years old with a diagnosis of cancer within the last year OR anyone who is on tablet/intravenous treatments for their cancer. It is also open to anyone who is receiving radiotherapy.

Who can’t take part?

Participation is not allowed if you have a clotting defect (such as haemophilia) or if you are taking anticoagulants (like warfarin or heparin)

Who is testing my sample?

The test is being done at approved Test and Trace laboratories. These laboratories have been commissioned to do testing for Test and Trace as part of the standard service for healthcare professionals, care home workers and teachers. 

What is the test?

The test being performed is the Roche anti-SARS-CoV-2 antibody test.

What happens if 10,000 have done the test?

After 10,000 individuals have done the test, the survey will be completed, and no further individuals may take part.

Why is the survey closed?

The survey was closed because all of the places to take part in this pilot have been filled.

How long will the survey recruitment be open for?

The survey will be open for as long as it takes 10,000 individuals to register to take part. This is currently envisaged to be until December 2021; however, it could be shorter depending on recruitment.

Should I do the test before or after my vaccine third dose?

You can do the test either before or after your vaccine third dose.

When will I know the research results from the survey?

You will know your individual antibody test result within 1-3 weeks from returning your blood test. The wider national analysis will start once 10,000 individuals have signed up to the survey. Initial analyses are expected to be completed by December 2021. 


National COVID cancer antibody survey governance

Who is running the survey?

The survey is run by the National COVID cancer antibody survey steering group in collaboration with NHSE. The testing for the survey is provided by NHS Test and Trace.

How was the survey launched/approved?

The idea for the survey was developed in April 2021 because there was emerging data suggesting that antibody responses in cancer patients were lower. The survey is one of the national initiatives to assess the effect of COVID-19 on immunosuppressed or vulnerable groups, in response to concerns that individuals with cancer were at an increased risk from COVID-19. These insights will help cancer services to provide the best level of safety for cancer patients.

Was the survey ethically approved?

Yes. As standard for COVID-19 surveys, it has been reviewed and approved by Public Health England Research Ethics and Governance of Public Health Practice Group.

Who is funding the survey?

The funding for the survey has come from the Department of Health and Social Care and Blood Cancer UK.

Who are the Institute of Translational Medicine?

The Institute of Translational Medicine are a department at the University of Birmingham who have been commissioned as a research partner for the National Covid Cancer survey.

Who are the chief investigators?

The chief investigators are Professor Peter Johnson and Dr Tom Fowler.

What is the role of NHSE?

NHSE are working closely with NHS Test and Trace and the National COVID cancer survey team to deliver this national cancer study. We have provided information to alliances about the study and have assisted with the communications plan.

 

Research questions

How will you use my data?

All data will be kept in compliance with the current data protection regulations. Data from this study will be used to protect, safeguard and monitor patients with cancer. More specifically, the study aims to improve understanding of the protection provided by antibodies generated following COVID-19 infection and vaccination. It will also assess how antibody responses are altered by having a diagnosis of cancer or having anti-cancer treatment. The data you provide will be held by The Institute for Translational Medicine and by NHS Test and Trace. The Institute of Translational Medicine will store data confirming that you understand the purpose of the study, have consented to take part and your communication preferences. The data you provide to record your consent will not be used for any research purposes. NHS Test and Trace will store your results as part of their legal requirements and as outlined in their privacy statement (https://www.gov.uk/government/publications/coronavirus-covid-19-testing-privacy-information/testing-for-coronavirus-privacy-information--2). The survey team will then process anonymised data that has been linked to your cancer registry record to understand the effect of cancer and anti-cancer treatment.

 

Where is my data stored?

The data you provide will be held in two places. The Institute of Translational Medicine will store data confirming that you are understand the purpose of the study, have consented to take part and your communication preferences. Test and Trace will store your results as per their legal requirements.

Does the data leave the UK?

No, all data will be stored in the UK

What analyses will be done in the study?

The study aims to improve understanding of the protection provided by antibodies generated following COVID-19 infection and vaccination. It will also assess how antibody responses are altered by having a diagnosis of cancer or having anti-cancer treatment.

Will I be contacted again?

You will only be contacted by the study team if you have given consent to be contacted. You may then receive further information about future COVID cancer projects.

Why will I be contacted again?

Some people with cancer may be at high risk of COVID-19.  Different programmes are underway to reduce this risk by stopping infections and promoting recovery. If you have given consent to be contacted again, you may be contacted to let you know of these initiatives and ways in which you might consider participating.

 

Test interpretation

How accurate is the test?

Data published show that the test has both a high clinical specificity and sensitivity (>95% for both)

What does the test mean?

Two tests are performed to determine antibody levels in your blood. These will look for a combination of antibodies in your blood, either generated from previous infection with COVID-19 or through the vaccine. You will get a result of your overall antibody result.

I have received a positive antibody test result, what does this mean?

A positive test result means that you have developed antibodies to COVID because you have either been infected with the virus or because you have been vaccinated against the virus. Further useful information is available from Blood Cancer UK (https://bloodcancer.org.uk/news/what-do-covid-antibody-test-results-mean-for-people-with-blood-cancer/).

It is important to continue to follow clinical guidance to minimise your risk from COVID even if you have received a positive antibody test, as a positive antibody test may give a false sense of reassurance. A positive test does not guarantee that your risk of serious illness from COVID is lower.

I have received a negative antibody test result, what does this mean?

A negative test result means that you have not developed antibodies to COVID. This may be because you have not been infected with the virus or because you have not developed antibodies against your COVID vaccine. Further useful information is available from Blood Cancer UK (https://bloodcancer.org.uk/news/what-do-covid-antibody-test-results-mean-for-people-with-blood-cancer/).  If you are unsure what to do, you should discuss your results with your oncologists/GP who will be able to help.

I have received a negative antibody test result, does this mean that I am not protected from COVID?

A negative test result means that you have no detectable antibodies in your blood. It does not necessarily mean that you are not protected from COVID. This is because the test only measures one part of your immune response, antibodies. Another type of immune cell, called T-cells, are also important. T-cells are not assessed in this survey because these tests aren’t readily available yet. If you are unsure what to do, you should discuss your results with your oncologists/GP who will be able to help.

The test result is different from one I have done elsewhere, what does this mean?

Different test suppliers perform slightly differently. A very small number of individuals might get different results. The study will assess how useful these tests are and if they are a useful tool to safeguard, protect and monitor cancer patients.  

My test is void, what do I do?

In a small number of individuals, the test is void. In this situation, you may go through the registration website and request another test.

Should all individuals with cancer have an antibody test?

Currently, antibody testing is not used widely for individuals with cancer. This is because large-scale studies have not been performed, and so more evidence is needed on the effectiveness of this testing approach. This study is one of the largest in the world and the insights gained will help understand if these tests are useful to safeguard, protect and monitor individuals with cancer.

Will I get my anti-S and anti-N results individually?

The two types of antibodies the test will look for are called anti-spike antibodies (anti-S) and anti-nucleocapside antibodies (anti-N). You will get a result of your overall antibody result. This is based on the combination of your anti-S and anti-N antibodies. Further information of how this is assessed is enclosed in appendix 1.

 

What is the difference between anti-S and anti-N antibody testing?

The tests can identify different types of antibodies. Anti-nucleocapside antibodies (Anti-N) are antibodies against the COVID-19 nucleocapsid protein. Your body would make these if you have had a previous COVID infection. Anti-Spike antibodies are antibodies against the COVID spike protein. Your body would make if you had a previous COVID infection or been vaccinated against COVID-19. This means that the test can detect if you have been infected previously, or if you have been vaccinated against COVID. You will get a result of your overall antibody result. This is based on your combination of anti-S and anti-N antibodies. Further information of how this is assessed is enclosed in appendix 1.

I have had a Moderna/AZ/Pfizer vaccine, will this affect my antibody test?

We think that all the vaccines being used will give similar antibody results. However, this will be carefully assessed in the study.

Should I tell other family members to pay for an antibody test?

The effectiveness of antibody testing is currently under evaluation. There are a number of government initiatives collecting evidence on this issue – further information is available at: https://www.gov.uk/register-coronavirus-antibody-test.

Where can I find out more information about antibody testing?

A lot of information about antibody testing is available from online resources. Blood Cancer UK have an information page where you can find out more about this topic: https://bloodcancer.org.uk/news/what-do-covid-antibody-test-results-mean-for-people-with-blood-cancer/

 

Cancer care

Should I cancel/delay/stop my cancer treatment?

You should not cancel/delay/stop your cancer treatment based on your antibody result. You should discuss your results with your oncologists/GP who will be able to help with giving professional advice about your cancer treatment.

Should I tell my GP or oncologist about my test result?

Your GP will automatically get a copy of your antibody test result. Whilst the antibody test result is unlikely to affect your cancer care, your oncologist may be interested in your participation in this survey and your test result.

 

COVID care

Should I have a third dose of the vaccine?

People undergoing cancer treatment are being offered a third dose of the vaccine. Participation in this survey does not affect your ability to receive this third dose. More information is available here: https://www.gov.uk/government/news/jcvi-issues-advice-on-third-dose-vaccination-for-severely-immunosuppressed  

Should I wear a mask because I have a negative antibody test?

It is not recommended that you make major/minor behaviour changes based on your test result. If you are unsure what to do, you should discuss your results with your oncologists/GP who will be able to help. However, in general masks are useful to reduce the risk of COVID to yourself and others. If you are unsure what to do, you should discuss your results with your oncologists/GP who will be able to help.

Can I use my test result to get access to new treatments such as Ronapreve (REGEN-COV/Regeneron) if I got COVID-19?

New treatments may soon be made available on the NHS for COVID-19, for patient who have been exposed to the virus or in the early staged of infection. Some of these treatment, like Ronapreve, will only be available to individuals who do not have high levels of antibodies to COVID-19. The results of your test performed by Test and Trace are available to your GP and on your national records. This result may be used in place of or alongside hospital tests to judge suitability for new treatments, subject to licensing approvals and availability. If you are unsure what to do, you should discuss your results with your oncologist/GP who will be able to help.