FAQ Regarding the Rheumatology COVID-19 Provider-Entered Registry

  • Which cases should be included?

All cases of COVID-19 in patients age 19 or older with rheumatic disease should be reported here, except from countries that are part of EULAR.  We are working closely with the EULAR Coronavirus and Rheumatic Diseases Reporting Registry and with the Pediatric registry  (will be added once available) and have aligned our data collection and reporting efforts. We will be sharing anonymized patient data with these registries for combined analysis of cases. DO NOT REPORT THE SAME CASE on this registry and the EULAR database as this will result in duplication of cases in the analyses.

  • Who should enter a case into the registry? 

Any healthcare provider in rheumatology or a related field who has a patient with a COVID-19 diagnosis  (including presumptive diagnoses based on symptoms/exposures) may enter a case. Staff members working with those providers may also report.  This registry is NOT for patients to record their own cases. Instead, please use the patient-reported registry (we will include this link once it becomes available).

  • How long will this take to do?

We anticipate this will take 5-7 minutes, possibly longer if you need to seek additional information on a case (optional, based on your time availability).

  • What kind of information is required?  

COVID-19 diagnosis method, clinical features, treatments, lab results, interventions and outcomes;  Rheumatic/autoimmune diagnoses and treatments; Patient characteristics (not individual identifiers) including demographics, comorbidity, and risk factors. Please see the PDF of our case report form for further details. 

  • What happens if the reporting provider doesn’t have all the info?

Some of the information may not be accessible for you, it is fine to mark ‘unknown’ in those cases. Alternatively, you can choose ‘save and return later’ at any point and obtain a link that will take you back exactly where you left off.  After you complete the survey, an emailed link will allow you to provide follow-up on each case.

  • When should the case be reported?

Cases can be entered anytime during the COVID-19 disease course. An emailed link will allow providers to enter follow-up information. Some providers may want to wait at least 7 days from symptom onset/COVID-19 diagnosis and allow sufficient time to have passed to observe the disease course through resolution of acute illness and/or death before reporting. We appreciate your time is pressured and precious currently and you may not know all of the details of your case. Report what you know. You may not have access to information to answer all questions. Do your best.

  • Will my patient’s identifiers be included on this site?

No.  The database collects anonymized patient data only. Identifiable reporter (provider) information is requested.

  • When will I find out about any results?

Please check our website, rheum-covid.org and follow us on Twitter at @rheum_covid for updates.  We anticipate the initial reports will come out in early April. We plan to provide the rheumatology community with regularly updated summary information on reported cases, including numbers of cases by country, number of cases by treatment, among others. We do not yet know the frequency of these reports but anticipate it could be as frequent as weekly. This will enable the entire rheumatology community to remain up to date regarding COVID-19 in patients with rheumatic disease.

  • Where will the data be stored?

The data from this registry will be stored at the University of California, San Francisco. The EULAR – COVID-19 data will be stored at The University of Manchester in the United Kingdom.

  • What ethical approvals are in place?

Please see the IRB and protocol page on this website.

  • I am in private practice, do I need to request separate IRB approval to enter cases?

There is no need for seeking an additional IRB, as the UCSF IRB should cover those in private practice.

  • Is there any requirement for us to keep any local records once we have submitted the case?

You can destroy (or not record) any local data.  The registry will automatically email you a de-identified link every time you enter a case and will keep of a queue of the cases you recorded with that link.  No case information will appear in the email.  That way you can add information to the case if needed at a future date if status changes. This obviates the need to store any local data anywhere, so should satisfy your IRB.