Information for patients and parents

A patient-powered registry of adults with rheumatic diseases, and parents of children with rheumatic diseases, in the setting of the COVID-19 pandemic.

About this study

The COVID-19 (Coronavirus) pandemic has quickly infected hundreds of thousands of people worldwide. While many people with COVID-19 infections have mild or no symptoms, a significant proportion of patients can become quite ill. At this time, little is known about how patients with rheumatic diseases or autoimmune conditions, many of whom use medications and drugs that suppress the immune system, are affected by the virus. We hope to recruit adults with rheumatic and autoimmune diseases, and parents of children with rheumatic and autoimmune diseases into our study to obtain insights about how best to prevent or treat COVID-19 in this potentially vulnerable population.

How this study works

You will be able to join the study by completing an initial survey that will ask about your medical history and medications that you take. Then, every week we will ask you to fill in a short survey to note any symptoms that you may have developed and whether you have been diagnosed with COVID-19. If so, we will ask you for more information about how you were treated and how you recovered from the disease.

Working with partners across the world, we have launched a European patient registry (although we welcome anyone from around the world to join us). Anyone with a rheumatological, autoimmune or autoinflammatory disease is invited to take part. We will ask you a series of questions now, and send follow-up surveys each week so we can learn how COVID-19 may affect you.

We also welcome people without a diagnosis to take part, including siblings of children, or spouses of adults, so that we can see if people with rheumatological conditions are affected in a different way or not.

Who is eligible to participate?

Adults with a rheumatic or autoimmune disease, as well as parents of children (under 18) with a rheumatic or autoimmune disease are eligible to enrol. People without a rheumatic or autoimmune condition may also sign-up to help give some context to our findings.

Who is running the study?

This project has been developed in partnership with a global collaboration called the COVID-19 Global Rheumatology Alliance, which includes a large group of academics, clinicians, and patients working together. This registry has been designed and built by Juvenile Arthritis Research in the UK, on behalf of ENCA (the European Network of Childhood Arthritis), and PReS (the Paediatric Rheumatology European Society). Together these organisations represent patients across Europe and beyond who have a rheumatic condition.

This European Patient Registry is part of the Global Alliance. It has been developed by patient organisations across Europe, including Juvenile Arthritis Research, ENCA, and PReS, in liaison with PRINTO and the BSR, and working with colleagues from a range of hospitals and research centres. Our questions are similar to those used in other countries, but have been amended for European patients (using our names for medications and conditions, for example).

LEARN MORE ABOUT THIS STUDY

Why should I join this study?

Little information is available regarding how patients with rheumatic and autoimmune diseases are affected by COVID-19. At this time, we don’t know how to best manage their medications and how to optimize treatment should they become infected. We hope that the information provided from this registry will improve the way that doctors manage and treat patients with rheumatic diseases with COVID-19 infections.

What will happen with the information I provide?

Your anonymous data, along with that of other participants, will be analyzed together to improve our understanding of how COVID-19 affects patients with rheumatic and autoimmune diseases. Your anonymous data will be shared with researchers to support the analysis of the results. Individual participants will never be identified. We plan to present the results of our study in various medical and scientific conferences, as well as publishing our conclusions in various medical journals. You can also access our website (www.jarproject.org/covid) at any time where we will update our progress.

If I join this study, what will I be asked to do?

You will be asked an initial set of questions about your medical history, medications, and how you’re trying to avoid COVID-19 infection. After the initial survey, we plan on checking in with you every week with a quick survey to see whether you develop new symptoms, change your medications, or develop COVID-19 infection. If you have become infected, we will ask you about your symptoms, how your infection is being treated, and how you recovered.

How will my privacy be protected?

Your data will be collected in a secure database accessible only to study staff. All of your responses will be anonymous, meaning that the researchers won’t know who you are. While we need to collect your email address to send you future surveys, this information will be kept separate from the data you provide.

How much time will I need to devote to this study?

The initial survey will take 5-10 minutes to complete, while future surveys should take less than 5 minutes.

What kinds of questions will I be asked?

The initial survey will ask basic demographics questions such as your age and gender, medical history, and medications. We will ask whether you’ve developed COVID-19 infection or how you’re preventing yourself from becoming infected. Every week you will receive a short survey asking about new symptoms, changes to your medications, and whether you developed COVID-19 infection.

Can I withdraw from the study?

You may withdraw your consent and discontinue participating at any time. This will not affect your treatment in any way. Any information you have already submitted will not be deleted from our records as it will already be anonymised. There is no way that anyone could use the anonymous data to identify you. To withdraw, you simply need to click on the Unsubscribe link in the emails inviting you to take part in follow-up surveys. You do not have to fill in every survey sent to you.

Will there be any risks to my privacy?

While we do collect your email address, which will identify you as having a rheumatic or autoimmune disease (or having a child with a rheumatic or autoimmune disease), we will never share this information with anyone and will keep it in a secure database only accessible to study researchers. Your data will be assigned a random number and will not be linked to your email address so that your responses will remain anonymous.