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To download a PDF copy of the new GRA COVID-19 Pediatric Survey, please click here.
The COVID-19 Global Rheumatology Alliance (GRA) studies how COVID-19 affects people with rheumatic diseases worldwide. For this survey, the GRA wants to learn about the experiences of children with rheumatic diseases regarding COVID-19 infection, its long-term effects, and decisions regarding COVID-19 vaccines.
We will ask you questions about your child’s health and rheumatic disease, whether or not your child developed COVID-19, any short-term or long-term symptoms that they might have developed, and your child’s experiences with the COVID-19 vaccines. We hope this information will improve the health of children with rheumatic disease worldwide.
Who is eligible to participate?
You are eligible to complete this COVID-19 survey if:
- You are 18 years of age or older AND
- You are the caregiver of a child less than 18 years of age with a diagnosis of a rheumatic disease during childhood.
You are eligible to complete the survey on behalf of your child regardless of whether or not your child has had a COVID-19 infection or received the COVID-19 vaccine. Everyone is welcome to complete this survey, even those who may have taken other surveys from the GRA.
About this study
The COVID-19 pandemic has dramatically impacted the health of children worldwide. In this study, we are interested in learning more about how COVID-19 has affected children with rheumatic diseases, including how it has impacted their short-term and long-term health. We also want to learn how parents made decisions regarding COVID-19 vaccinations and children’s experiences receiving those vaccines.
How this study works
The study will involve a single survey asking about your child’s rheumatic disease, COVID-19 experiences, your decisions regarding the COVID-19 vaccine, and your child’s experiences receiving any of those vaccines, if applicable. We will ask you to provide information about dates and locations (state/province, country), but we will NOT collect other identifiable information such as names, emails, or IP addresses.
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. It is funded by the American College of Rheumatology. The survey was developed by physicians, researchers, patients, and patient-support organizations. The survey is a collaborative project between doctors and researchers from Boston Children’s Hospital, Harvard Medical School, and McMaster University. The study was reviewed and determined to be exempt by the Institutional Review Board at Boston Children’s Hospital. Dr. Jonathan Hausmann is the Principal Investigator of the study.
LEARN MORE ABOUT THIS STUDY
Why should I join this study?
We hope to understand better how COVID-19 has affected the short-term and long-term health of children with rheumatic disease worldwide. This information may allow physicians to better care for the health of children impacted by COVID-19. We want to learn how parents balanced the decisions regarding vaccinating their children against COVID-19 to inform future vaccination strategies. We want to share the experiences of children with rheumatic disease who received COVID-19 vaccines worldwide, a group that was not explicitly studied in the original vaccine research studies.
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 its effects on children. Individual participants will never be identified. Our data scientists at McMaster University will analyze the data. 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 child’s underlying rheumatic disease and history of COVID-19 infection. We will also ask questions about any long-term effects of COVID-19, your decisions regarding vaccinating your child against COVID-19, and your child’s experiences in receiving any COVID-19 vaccine.
How will my privacy be protected?
We will not collect your name, email address, IP address, or other data that will make you easily identifiable. We will only collect the 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 approximately 15 minutes to complete.
What kinds of questions will I be asked?
We will ask you about your child’s rheumatic disease, whether or not they have developed COVID-19 infection, and what symptoms they had at the time of the infection. We will ask whether your child had any long-term effects from COVID-19 infection. We will ask about your decisions regarding vaccinating your child with the COVID-19 vaccine and the experiences your child had with the vaccine. Finally, we will ask basic demographic 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 identify your child as having a rheumatic disease. If you decide to share with others that you participated in this study, you will share 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 the experience of children during the COVID-19 pandemic.
Interested in helping to spread the word about this survey? Please click here for our communications toolkit!