JointHealth™ express   April 6, 2020

COVID-19 Global Rheumatology Alliance: Please take this survey to help “Unlock the COVID-19 Code: YOU Are the Key!”

Dear friends and colleagues,

As Founder and President of Arthritis Consumer Experts, I am calling all patients organizations, rheumatologists and rheumatology healthcare professionals, and all rheumatic disease patients to help the COVID-19 Global Rheumatology Alliance (GRA) “Unlock the COVID-19 Code!”

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 GRA 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.

Rheumatic disease patients aged 18 or older and parents of kids with rheumatic diseases, please take the Patient Experience Survey. Any patient from any country in the world may join the study. We are all in it together and it only takes 15 minutes of your time!

Thanks, Merci, Grazi, Muchos Gracias…..!

Cheryl Koehn
Founder and President, Arthritis Consumer Experts

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. The survey will ask you questions about any symptom that you may have developed and whether you have been diagnosed with COVID-19. If so, it will ask you for more information about how you were treated and how you recovered from the disease. Finally, the survey 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 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 and Harvard Medical School. The study was determined to be exempt by the Institutional Review Board at Boston Children’s Hospital.