Frequently Asked Questions
What is the purpose of this registry?
The goals of the registry is to rapidly define the impact of COVID-19 on patients with MSand how factors such as age, comorbidities, and MS treatments impact COVID outcomes.
How is the data from this registry going to be shared/disbursed?
The data will be shared 1) directly on the website http://www.COViMS.org, 2) through listservs and social media, and 3) via scholarly publications. We plan to update the website frequently, with reports including number of cases (and COVID outcomes) by country, number of cases by treatment, etc.
What steps have been taken to ensure the security of the data?
We have created a registry that contains only de-identified data, in accordance with HIPAA Safe Harbor De-Identification standards. The Washington University (WU) Office for Human Research Protection has determined that storage and analysis of de-identified data does not constitute human subjects research as defined under federal regulations [45 CFR 46.102 and 21 CFR 56.102] and does not require IRB approval.
Our database system (REDCap) provides for secure web-based data entry with the data stored on secure servers at WU. All data is encrypted during transmission. The web and database servers are monitored by the IT staff, patched frequently, and scanned by a third party vendor to ensure that they are protected against known vulnerabilities. Access is by individual user id, and is restricted to the forms and/or functions that the user needs to have.
When should I fill out a Case Report Form?
If you have a patient with multiple sclerosis (MS) or related disease and suspected or confirmed SARS-CoV-2/COVID-19 then please complete the form after the patient has had COIVD-19 for a long enough duration to experience partial or complete recovery, hospitalization, or death. If the patient’s clinical status changes after a form has been completed, please contact info@COViMS.org.
Once a survey has been submitted, can it be re-accessed or edited at a later time? What if I have updated information about a case after submission?
Once a survey has been submitted it can not be re-accessed or edited at a later time. However, if you have updated information or any changes since you have reported a case, please re-report the case and email info@COViMS.org to ask our team to remove the duplicate entry.
Who should fill out the Case Report Form?
Health care providers taking care of patients with MS and documented COVID-19.
Can patients fill out the Case Report Form?
No, the Case Report Form is designed to be filled out by a health care provider. Patients with MS and documented COVID-19 should encourage their health care provider to complete a Case Report Form on their behalf.
I am a patient. How can I help?
Thank you for your interest in helping with this effort! Please consider asking your health care provider to report on our website (COViMS.org) if you or any of their patients contract COVID-19. Studies seeking patient participants are listed here.
How long will it take to complete the survey?
It will take approximately ten minutes to complete the survey.
Is there a collaborative goal with the users of the database?
This is a collaborative, North American effort. With users reporting cases in real time, we hope to rapidly determine the impact of COVID-19 on patients with MS and related disease and ascertain how medications, comorbidities, and demographic factors modulate their risk. As above, these data will be made available on our project website and frequently updated.
Are there any partnering organizations/societies?
Official partners include the National Multiple Sclerosis Society and the Consortium of Multiple Sclerosis Centers.
If I have additional questions, whom should I contact?
Please direct questions to info@COViMS.org