Profiling the response to exertion in long Covid patients

No. Your participation is completely voluntary, and it is up to you to decide whether to take part.

Whilst the research team is working closely with clinical collaborators, this test will be conducted by clinical exercise scientists that are not medically trained. Therefore, we are not able to provide you with any clinical diagnosis.

We have established strict exercise termination criteria that will be adhered to at all times. If your test is stopped for any reason, you will be given an explanation as to why and asked to contact your GP/long Covid clinic for further assessment and investigation.

If urgent medical attention is required, the research team will contact the emergency services. In any of these instances, the research team will complete an adverse event report which will be submitted to the ethics committee for review and will notify them of the details/actions and steps taken in this case.

The research team involved in delivering this project is experienced in delivering clinical exercise assessments and we have developed detailed operating procedures and risk assessments. We have worked closely with a team of patient and public representatives and clinicians to develop this protocol which has been reviewed and approved by an NHS research ethics committee.

Our protocol has been specifically designed to make sure that you are working within your current physical capacity, and this is not a maximal or graded exercise test and has not been designed to push you to your physical limits. We will ask you to exercise but we can learn a lot from working at safe and tolerable levels.

If you want to stop at any point, then you will be able to do so.

You might experience an exacerbation following the testing. Through our adapted protocol though, we aim to prevent this, but we cannot promise that this will not happen. We will not test you beyond the information we need to collect, and we will be in constant communication with you throughout your participation. All details relating to symptoms will be recorded and inform future learning.

Not being able to complete all the assessments is completely okay. We will work with you and within your capability to learn as much as possible, but we will never push you to complete anything that you are not happy or comfortable with or able to do.

Two-day CPET tests are the gold standard tests to determine changes in physiological function and capacity. This will help us to better understand what is happening in the body during and after exercise on subsequent days. To date, there is very little detail about how the different systems of the body work and interact with long Covid and how this is affected by exercise.

Monitoring your symptoms is a key part of learning about how people with long Covid respond to exercise. The data we collect when you are with us in the laboratory is only one part of the puzzle and we will track your symptoms over several days to help further increase our understanding. To do this, you will need access to a smartphone. If you don’t have access to a smartphone, we can provide you with a paper version of the form.

Yes, if you are willing to share your data with us, we would be interested in comparing data collected using different methods to the data we are collecting as part of the study.

All data collected will remain confidential under the regulations of the GDPR under the Data Protection Act (2018). Only the research team and research partners will have access to the data and all data will remain strictly confidential and stored in a secure location. Data will not be linked directly to individuals and will be encrypted by a password for storage. Individual participants will be unidentifiable in the analysis and write-up.

Members of the research team will always wear N95 masks and take daily lateral flow tests. All testing sessions will take place in a well-ventilated room, with HEPA filters and with the windows open. We also prevent back-to-back testing to allow all rooms/surfaces and equipment to be cleaned and aired thoroughly using a strict standard operating procedure. We will accommodate any requests that you make to ensure that you feel safe when visiting us.

Yes, we have a recliner chair available for your use. You will sit or lie down in this chair for the tests and we can adjust it to suit you, including making it flat. You can also spend time quietly in the chair at any time during your visit if you need to rest. We can also close the blinds and dim the lights so that the room is dark.

Yes – all sites have access to private and accessible changing facilities.

Parking is available at each study site, and we will cover any travel and parking expenses. Please keep your receipts and share them with the study team. Access and parking have been arranged to reduce the time/distance required for you to walk. All buildings have access to lifts, and we also have access to a wheelchair if this is required; we will need a few days' notice to arrange this for you.

Yes, of course. We will provide them with somewhere to wait whilst you are with us. We will also be able to offer light refreshments for them whilst they wait.

Gilead Sciences is the funding body for this trial. It is covering the financial costs associated with the study, but the data remains the intellectual property of the research team and they will not be involved in the analysis or the publication of the results.