For Current Participants
This page is for people who are already participants in the EXCEED study. If you have not previously been a part of EXCEED and want to get involved please click here.
EXCEED and COVID-19
COVID-19 has become a global health crisis. There is currently no cure so research is needed to understand more about this new virus and help us tackle the pandemic. We want EXCEED to contribute to this research.
Thanks to information gathered from participants like you, we have lifestyle, health and genetic data from over 10,000 people. We can add COVID-19 data to this existing information to find out why some people develop more severe COVID-19 than others, and to understand the impact of COVID-19 on long term health conditions.
EXCEED and the UK Longitudinal Linkage Collaboration (UK LLC)
As an EXCEED participant, you have played a vital role in tackling COVID-19 by completing our COVID-19 questionnaire or taking part in our antibody testing sub-studies.
As well as using your questionnaire responses, EXCEED are collecting routine health data from official records - known as data linkage - to help study COVID-19. This is a secure and efficient way that data collected about participants can be used to make a difference – and at the heart of how EXCEED can help understand the impact of the pandemic. For example, linked health records can be used to understand how COVID-19 may have affected how people have accessed NHS services.
Several studies, including EXCEED, have been invited to deposit de-identified COVID-19 data (with your personal information removed) in a national secure research database, known as the UK Longitudinal Linkage Collaboration (UK LLC). The UKLLC database will enable approved researchers to investigate high-priority COVID-19 research questions and investigate health and wellbeing throughout and beyond this pandemic.UK LLC Privacy Notice
How you can help
If you have previously participated in EXCEED then you have already provided us with information on your lifestyle and health.
We would now like to add information about your health since the COVID-19 pandemic to allow us to understand more about COVID-19 and its consequences.
If you would like to be involved in the COVID-19 part of the study we will ask you to complete a questionnaire about your health, including COVID-19 symptoms and other ways the pandemic may have affected you. At a later date, we will send you further questionnaires. These can all be done online. In the future, we may also send a kit to test whether you have had the virus that causes COVID-19, if this is feasible.
You will receive an email, text and/or letter from us with a link to complete the current COVID-19 questionnaire. If you have not received this, please contact us by phone 0116 252 5997 or email firstname.lastname@example.org.
In addition, you can also use the COVID Symptom Study app developed by King’s College London and the health science company ZOE. It takes about 1 minute per day to record whether you have any symptoms of COVID-19 on the app. This is a separate study which is completely independent of EXCEED, but EXCEED would request to access your data from the Symptom Tracker app. You can find out more about the Symptom Tracker app and how they would use your information from their website. You do not have to use the app to take part in EXCEED – your contribution is very valuable either way.
You can contact us with any questions by sending an email to email@example.com or by ringing us on 0116 252 5997.
Help us to shape EXCEED
If you would like to contribute to developing the study further, you can be involved in our participant group. Members of this group have previously helped us choose a logo, develop patient information sheets and test our website. Two members of the group are part of the Scientific Committee which runs the study and reviews applications from researchers to use EXCEED for their research projects.
We also have a larger meeting each year, usually in November, where we discuss progress and ask for feedback on issues affecting the study. All participants are welcome to attend this meeting.
To find out more, please email us at firstname.lastname@example.org or by calling us on 0116 252 5997.
You can access the original patient information sheet and consent form that you signed when you joined the study. These will be available on the website soon, but in the meantime please contact us by email or phone if you would like a copy.