Volunteer handbook
Are there any questions you have that we haven't answered? Browse our Frequently Asked Questions to find an answer.
About Coronagenes
We’d like to invite you to join Coronagenes. This is a research study looking at the signs and symptoms of the coronavirus (COVID-19) pandemic. We aim to discover gene variants that may increase or decrease the risk of COVID-19 infection or development. To find out more about Coronagenes, visit the link below:
We aim to discover gene variants that may increase or decrease the risk of infection or development of COVID-19. We also hope to find any genes influencing the severity or duration of disease. People who have not had the disease or symptoms are just as important to the study as people who have.
Understanding the effect of genes could lead to better ways of preventing and treating infections in the future. Not only is this important for the present COVID-19 pandemic, but it’s likely there will be further epidemics in the future.
Coronagenes is co-led by Professor Albert Tenesa and Professor Jim Wilson at the University of Edinburgh and managed by the Coronagenes team. The study wouldn't be possible without the funding received from the below groups:
HDR-UK
For more information about the team visit:
Almost immediately, we are planning to publish the results of our research as soon as enough participants provide their genotypes and complete the questionnaires, and we have had time to analyse the data and are sure the results are robust. To speed research efforts, we’ll update these results at least monthly during the duration of the lockdowns. However, it will take time and work to understand how these results could help finding medicines to treat COVID-19. Research is likely to be published and you'll see all our latest updates on the website, in social media or via newsletters we send you, if you take part.
Get Involved
You can take part if you:
- Are aged 16 or over
- Have access to the internet, to complete the survey
Anyone interested in taking part in Coronagenes must read the volunteer information before consenting. This will be sent to you by email if you register for the study.
If you want to view this information now, you can read our volunteer information below:
Please check you are able to take part before joining. If you’d like to get involved, you can sign-up to the survey in the below:
Yes, it doesn't matter what studies you've been involved in before, we want to hear from you! If you decide to do the questionnaire, we ask for you to tell us which study, or studies, you’ve already taken part in.
Yes, you can be located anywhere in the world. We are asking anyone over the age of 16 to get involved.
Taking Part
If you choose to take part, you will be asked to read the volunteer information and provide your consent. After this, you'll be invited to fill in an online survey. If you have DNA data from a company, we ask that you upload it. If you don't have this we may ask you to provide a saliva sample in future, We may also invite some people to provide a finger-prick blood sample. We ask you to do further, daily, questionnaires if you show any signs or symptoms of coronavirus (COVID-19). They should take no more than a couple of minutes to complete. We’ll email you to remind you to do this.
After this, no further involvement is required. However, you may be invited to take part in more research in the future. If invited, you'll be given a separate consent form, with information about it. You do not have to take part in any of this future research. We'll also recontact you with updates on Coronagenes progress, unless you tell us otherwise.
When you click the link to join, you’ll be taken through the volunteer information and consent process. The survey will be available to answer immediately after consent and will take about 30 minutes to complete. You can fill in the survey on either your computer, laptop, tablet or smartphone. You’ll be able to leave and re-enter the survey whenever you like and your information will be saved. You can return by clicking the link on our website. If you have any technical issues with the survey, you can email coronagenes@ed.ac.uk.
We’ve designed our web application to work on a wide range of web browsers and devices.
Your connection to our web application is maintained over a secure connection at all times.
There are some older web browsers that should be avoided as they are no longer deemed secure, these are:
- Internet Explorer 11 on Windows 7 & 8 based devices
- Safari 8 (and below) on Apple MacOS and iOS devices
Alternative web browsers, such as Google Chrome and Mozilla Firefox, can still be used on older platforms.
Your DNA Data
The aim of our Coronagenes study is to understand why some people are getting ill from coronavirus (COVID-19) and others are not. Your DNA data will allow us to study the genetics of COVID-19 immediately. This will speed up our research as we won’t have to wait for a saliva sample from you once lockdown has eased. People who have not had the disease or any symptoms are just as important to the study as people who have.
If you’d like to read more about the aim of our research, visit the link below:
To download your DNA data, visit the company website that has your data and follow the download procedures. We have download and upload instructions for the four biggest genetic testing providers below:
Our upload system is simple. Navigate to our dashboard, by clicking the link in your registration email. Choose the file you have downloaded from the company and upload it. This process is the same for DNA data that comes from any company. For full instructions click the link below.
For this study, we are looking for the “raw” download of genetic data from you. This “array data” contains hundreds of thousands of genetic variations and is provided by companies like Ancestry.com, 23andMe and FTDNA. Unfortunately, mitochondrial DNA and Y chromosome data, other DNA sequence data, maps and summaries provided by companies cannot be used for our research purposes.
We accept genetic data ("raw data") from 23andMe, Ancestry, Family Tree DNA, MyHeritage or any other direct-to-consumer company.
If you have engaged with an ancestry or health DNA testing company and received results, you will be able to download the raw DNA data underlying the results. For example, you could have maps showing where in the world your ancestors or relatives lived.
Yes, anyone over the age of 16 can take part, even if they don’t have DNA data. Please be advised, we may ask you to provide a saliva sample once lockdown measures have eased, so that we may include your genetic data in the study.
Your data will be labelled with only unique codes (no names or addresses), so that we, and our research partners, will not be able to identify you.
We plan to look for patterns of ill health in people who take part in the study. For UK volunteers, we’ll also use routinely recorded healthcare data, including drug prescriptions, hospital admissions, GP records and lab tests. To do this, we ask your permission to link to available healthcare records. All information is treated confidentially.
Data and samples won’t be released to any researcher in an identifying way. We may make information and samples from the study available to certified researchers with proper approvals in place. This could include researchers worldwide or with commercial companies developing new treatments or lab tests. We will not provide your sample to insurance companies, security services or lawyers, unless requested to do so by court order.
Protecting Your Data
Any personal details will be stored in a secure location and kept separate from study data. Study data and DNA from your samples will be stored in secure buildings, using a unique anonymous identification (ID) code. All data will be kept in a password-protected database and linked by your unique ID code. Samples will be processed and the DNA stored in a secure lab with your ID code. Personal details will never be stored with samples or data.
The Coronagenes service is protected using the highest level of threat prevention against both known and unknown targeted attacks. We're thankful to Pentest (https://pentest.co.uk) security experts, for their assistance in testing our cyber-security.
We plan to keep the data and samples and continue to track health in those who have taken part, for as long as medical research can benefit. This will give the project time to gather information for researchers, so they can study the signs and symptoms of coronavirus (COVID-19). We also want to understand the short and long term consequences of the pandemic.
Coronagenes is based at The University of Edinburgh, who’ll be the legal owner of the data and samples collected. In practice, Coronagenes will manage the data and samples, maintaining and building the public good. If you take part, you will not own your data or samples; this will be explained before consent is signed.
Coronagenes has security in place to ensure complete anonymity and to protect the genetic information we collect. We will always ensure that identifying data (e.g. name, address, date of birth) are kept separate from all other information about genetics. Those involved are fully trained to maintain your confidentiality.
Researchers who analyse the data will not be able to identify any one person. Study data and DNA from your samples will be stored carefully in secure buildings, using a unique anonymous ID code. This code allows researchers to access an anonymous copy of the information they need. They will not be able to use your ID to identify you.
Our research has been reviewed by an independent group of people, called a Research Ethics Committee. They’re here to protect your safety, rights, wellbeing and dignity. This project was reviewed and given a favourable opinion by the West Midlands Research Ethics Commitee.
If the project is still running and you have not withdrawn your data and samples before you die, we’ll retain them and continue to maintain confidentiality and security.
Your anonymised information will only be used by researchers who have relevant scientific and ethical approval for research that you have consented to. This could include researchers working in other countries or with commercial companies who are looking for new treatments or lab tests.
We will not give access to the following:
- Insurance companies
- Current or future employers
- Police (unless requested to do so by law)
The Coronagenes data access committee will have authority over access and use of project data. We will ensure we have a clear management structure and that all projects are covered by the correct ethical approvals. All users will only be able to access anonymous information and will be held to the same high scientific and ethical standards.
Your information will only be used by researchers who have relevant scientific and ethical approval for research. This could include researchers working in other countries or with commercial companies who are looking for new treatments or lab tests.
You’re providing your data and any samples as gifst. You won’t receive any payment for your contribution. The University of Edinburgh and Coronagenes operate on a non-profit basis, meaning we won’t sell your data or samples.
Samples may be made available, anonymously, to other research institutions, in the public and private sector, and help researchers make an invention. If an invention is created from research on your samples, you won’t receive any compensation or payment.
If you would like to complain about our handling of your data, you can contact the University’s Data Protection Officer via email at dpo@ed.ac.uk or write to:
Data Protection Officer, Governance and Strategic Planning, The University of Edinburgh, Old College Edinburgh EH8 9YL Scotland
Why Take Part?
The main benefit is the chance to help with medical research. You’ll be helping researchers, who will use your data to understand the genetics behind COVID-19. This research could help health services (like the UK National Health Service, NHS) planning and, in time, may benefit future generations.
We're are planning to publish the results of our research as soon as enough volunteers complete the questionnaires and provide their sample. We'll also need time to analyse the information and be sure the results are strong. To speed up research efforts, we’ll update these results at least monthly during the duration of worldwide lockdowns. However, it will take time and work to understand how these results could help find treatments for COVID-19. Research is likely to be published and you'll see all our latest updates on the website, in social media or via newsletters we send you, if you take part.
Due to the nature of this study we won't be feeding back information to you about your own data. However, we will publish reports about the COVID-19 pandemic. It may take some time for these reports to be published though. We'll also update our website and social media channels with information on our research progress.
Unfortunately, as with most charity and public sector research, people who take part will not be paid.
The first survey will take some time, as will any follow-up surveys. However, your time and effort will greatly benefit our research. Your DNA data is especially important to us. During lockdown it is difficult to process samples and we would like to speed up discoveries to inform the development of coronavirus medicines. Producing the saliva (spit) required (a teaspoon) for the kit and posting this back to us can also take some time. You may find the process of providing a finger prick blood sample uncomfortable, if you have been asked to do this.
Who to contact?
In order for you to receive your saliva kit, blood kit and any information regarding future projects, it’s essential that we hold your up to date information. To change any of this information, please contact us. Details can be found in the link below:
If you haven't heard from us, when you expected to, you can reach us using the details on the webpage below:
It’s important, before you join the study, that you discuss any concerns you have with a member of the study team. Our research is more valuable if few people choose to withdraw from the study. However, you can withdraw at any time without giving a reason.
To withdraw you can contact us and let us know what type of withdrawal you would like to have:
- ‘’No further contact’’: This means we’d no longer contact you with study updates or requests to join future studies. However, we’d still have permission from you to use the information and samples you previously provided. We’d also still be able to receive information from your health records. We will also follow this guideline if you lose capacity to consent.
- ‘’No further use’’: In addition to ‘’no further contact,’’ we’d no longer make your data or samples available for research. Please note, we won’t be able to remove results from research already performed or those currently being performed. We’ll ensure that your data and samples are no longer available for future research.
Details on how to contact us can be found in the link below:
It’s important to us that you have all the information you need before you join the study. If you can’t find the answer to your query here, you can contact us. Details can be found in the link below: