As the COVID-19 crisis worsens around the world, rheumatic disease patient organizations and the patients we serve are looking to help. We all want to be part of an effort that “unlocks” the COVID-19 code, and now our global patient community has a chance to do just that!
We are interested in collaborating with you and with your members in learning how best to treat children and adults with rheumatic diseases during the COVID-19 pandemic. We are supporting all patient-facing registries that would like to collaborate with us in capturing the rheumatology patient experience during the COVID-19 pandemic. We have also created the COVID-19 Global Rheumatology Alliance Patient Experience Survey for patient organizations to distribute, if preferable.
The survey questions were designed to mirror the international physician survey that is currently taking place. We edited the survey to address additional aspects of care that were of importance to patients. The survey has been edited by various patients and patient organization representatives from across the world.
Our survey was designed for adults 18 years of age and older, as well as for parents of children with rheumatic diseases. Questions ask about the patient’s medical history and medications, development of symptoms and diagnosis with COVID-19. If patients have been diagnosed, we will ask for more information about how they were treated and how they recovered from the disease. We will ask patients about how the COVID-19 pandemic has changed their behaviors, the decision to take certain medications, rheumatic disease activity control, and how they have been coordinating with their rheumatologists. Finally, we ask about how the pandemic has affected their employment or education, as well as their mental and physical health.
As a patient-facing organization, there are two different ways to collaborate with us:
- 1. You can download our entire survey for you to edit and share it with your members. By borrowing our survey questions, you agree to share your aggregate results with us. In order to publish these results, we encourage you to submit your survey to an Institutional Review Board (IRB) prior to disseminating the survey. We also included our IRB submission, which you can borrow to submit your own.
- 2. We have created an anonymous survey that you can share freely with your members. It is available in several languages and has been vetted by patients and physicians from around the world. After answering the questions, patients will indicate their membership to any organization they belong to. At the end of the study, we will provide you with aggregated results from your own members. Because this survey was reviewed by the IRB, results will be submitted for publication.
- Here’s a sample invitation email you can send to your members
If your organization would like to partner with us, please let us know by emailing us at email@example.com
Patient Engagement Lead
Jonathan S. Hausmann, MD
Patient Registries Collaboration Lead