To download a PDF copy of the GRA COVID-19 Vax Survey: Click here
As the COVID-19 Global Rheumatology Alliance, we are surveying people with rheumatic disease to better understand their experience during the COVID-19 pandemic and explore risk factors for developing COVID-19. With the recent availability of various COVID-19 vaccines, we are interested in learning how people with rheumatic disease make decisions regarding the vaccines in light of their rheumatic disease.
We will ask you questions about your health and rheumatic disease, whether or not you developed COVID-19, as well as your opinions regarding the COVID-19 vaccines, vaccine availability in your area, and guidance on the vaccine that you may have received from your doctors. We hope to understand better the barriers and facilitators that people with rheumatic disease encounter regarding COVID-19 vaccination so that we may help to improve the health of people with rheumatic disease across the world.
About this study
The COVID-19 pandemic has genuinely changed the world during the past year. We are interested in studying risk factors for developing COVID-19 among people with rheumatic disease. The COVID-19 vaccines can decrease this risk and bring the pandemic to an end. However, it is unclear whether the community of people with rheumatic disease has access to and are receiving these vaccines and their perceptions of the vaccine and how they manage their medications during vaccination. We aim to collect this information to understand the barriers and facilitators that govern patient perceptions surrounding vaccines and find the best way to address them.
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. While we will ask you to provide information about dates and location (state/province, country), we will NOT collect other identifiable information such as names, emails, or IP addresses. We will ask you 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 your perceptions, intentions, and overall opinions on receiving the COVID-19 vaccines.
Who is eligible to participate?
Adults ages 18 and over with a rheumatic disease are eligible to enroll. Our survey is open to adults from any country in the world.
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 understand the patient experience during this pandemic better. The survey is a collaborative project between doctors and researchers from Boston Children’s Hospital, Beth Israel Deaconess Medical Center, Brigham and Women’s Hospital, Harvard Medical School, Stanford University, the National Institutes of Health, and McMaster University. The study was determined to be exempt by the Institutional Review Board at Boston Children’s Hospital.
Dr. Jonathan Hausmann is the Principal Investigator of the study. Dr. Hausmann has in the past received financial compensation for consulting on behalf of Pfizer and Pfizer is the creator of a COVID-19 vaccine. As in all research studies, the Hospital has taken steps designed to ensure that these financial relationships do not endanger research subjects, or undercut the validity and integrity of the information learned by this research.
LEARN MORE ABOUT THIS STUDY
Why should I join this study?
At this time, we do not know how to best manage the COVID-19 vaccine in people with rheumatic disease. We hope to understand your perceptions of and experience with the COVID-19 vaccine. The information provided from this study will improve our understanding of factors that influence decision-making regarding the COVID-19 vaccine and ways of addressing any barriers encountered.
What will happen with the information I provide?
Your data, and that of other participants, will be analyzed together to improve our understanding of COVID-19 and the perceptions of the COVID-19 vaccine among people with rheumatic disease. Individual participants will never be identified. Other than dates and location, we will not collect any personal information that would allow you to be identified. Data will be analyzed by our data scientists at McMaster University and at the National Institutes of Health. We plan to present our study results at medical and scientific conferences and publish our conclusions in various medical journals. We will 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 your perceptions and experience with the COVID-19 vaccine and other vaccines you may have had in the past.
How will my privacy be protected?
We will not collect your name, email address, or IP address, or other data that will make you easily identifiable. We will only collect data necessary to conduct our research. The researchers won’t know who you are, and your data will be analyzed in aggregate with that of other participants. 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 10 minutes to complete.
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 ask about how your rheumatic disease has been controlled and whether you have communicated with your rheumatologist regarding the COVID-19 vaccine. We will ask questions surrounding your perceptions/opinions about vaccines, particularly the COVID-19 vaccine. We want to understand what factors influence your decisions for or against receiving the vaccine, as well as the sources of information that you frequent to make your judgment. 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 understand vaccine perceptions to improve the care of adults with rheumatic diseases during the COVID-19 pandemic.