Patient Experience Survey

Click here to take the COVID-19 Rheumatology Patient Experience Survey
(Available in English, Arabic, Chinese, French, German, Hebrew, Italian, Portuguese and Spanish)

About this study

The COVID-19 (Novel coronavirus) pandemic has quickly infected over a million people worldwide.  While most 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, many of whom use medications and drugs that suppress the immune system, are affected by the virus.  We hope to recruit adults with rheumatic diseases, and parents of children with rheumatic 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

The study will involve a single survey that will ask about your medical history and medications that you take to treat your rheumatic disease. We will ask you questions about any symptom 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. Finally, we will ask you about how the COVID-19 pandemic has changed your behaviors, the decision to take certain medications, how your rheumatic disease has been controlled, and whether you have been able to communicate with your rheumatologist.

Who is eligible to participate?

Adults ages 18 and over with a rheumatic disease, as well as parents of children with a rheumatic disease are eligible to enroll. Any patient from any country in the world may join our study.

Who is running the study?

The study is sponsored by an international collaborative, the COVID-19 Global Rheumatology Alliance, which includes a large group of academics, clinicians, and patients working together. The survey was developed by physicians, patients, and patient-support organizations to better understand the patient experience during this pandemic.  The survey is being managed by doctors and researchers from Boston Children’s Hospital, Beth Israel Deaconess Medical Center, and Harvard Medical School. The study was determined to be exempt by the Institutional Review Board at Boston Children’s Hospital.

LEARN MORE ABOUT THIS STUDY

Why should I join this study?
Little information is available regarding how patients with rheumatic diseases are affected by COVID-19.  At this time, we do not know how to best manage rheumatic medications and how to optimize treatment if patients with rheumatic disease become infected. We hope that the information provided from this study 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 diseases.  Individual participants will never be identified. We will not collect any personal information that would allow you to be identified. We plan to present the results of our study in medical and scientific conferences, as well as publish our conclusions in various medical journals. We also present interim results on this website (rheum-covid.org).

If I join this study, what will I be asked to do?
You will be asked questions about your underlying rheumatic disease and whether you have been diagnosed with COVID-19 infection.  If so, we will ask you further questions about how the diagnosis was made, what symptoms you had, and how it was treated.  We will also ask questions about how you have been managing your rheumatic medications, whether you have needed to contact your rheumatologist, and how your underlying rheumatic disease has been controlled.

How will my privacy be protected?
All of your responses will be anonymous, meaning that the researchers won’t know who you are.  We are not collecting any information that will allow you to be identified. Your data will be collected in a secure database accessible only by study staff. 

How much time will I need to devote to this study?
The survey will take 8-15 minutes to complete, depending on your responses.

What kinds of questions will I be asked?
We will ask you whether you have been diagnosed with COVID-19 infection. If so, we will ask you additional questions about how you were diagnosed and treated. We will also ask questions about how you have changed your behaviors and decisions to take medications during the pandemic. We will ask about how your rheumatic disease has been controlled and whether you have been able to reach your rheumatologist. Finally, we will ask basic demographics questions such as age,  gender, and other medical history.

Can I withdraw from the study?
You can decide to stop participating in this study at any time.

Will there be any risks to my privacy?
We will not collect any personal information as part of this study (such as names, email addresses, IP addresses, etc).  Researchers conducting this study will never know your identity. By completing this survey, you are identifying yourself as having a rheumatic disease (or having a child with a rheumatic disease). If you decide to share with others that you participated in this study, you will be sharing the fact that you or your child have a rheumatic disease. 

Will my data ever be sold to third parties?
Your data will never be sold to anyone, ever. The data will only be used by our group of academics, community rheumatologists, patients, and patient organizations to improve the care of adults and children with rheumatic diseases during the COVID-19 pandemic.

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