The Covid-19 Global Rheumatology Alliance is continuing to gather patient experience surveys which Myositis UK is inviting members to take part in. You can partake whether or not you have been diagnosed with coronavirus (Covid-19).
The patient experience survey is for adult patients with a rheumatic illness or the parents of a child with a rheumatic illness. Any patient from any country in the world may join the study.
With this information, the Alliance hopes to obtain insights about how best to prevent or treat Covid-19 as well as understand the challenges patients are facing in this uncertain time.
About the 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.
The Alliance hope to recruit adults with rheumatic diseases, and parents of children with rheumatic diseases into their 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, and whether you have had Covid-19 or developed symptoms.
More details of the survey questions can be found on the website.
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. Myositis UK is supporting this initiative.
The survey was developed by physicians, patients, and patient-support organisations to better understand the patient experience during this pandemic.
The survey is being managed by doctors and researchers from Boston Children’s Hospital and Harvard Medical School.