Frequently
Asked
Questions

Browse through these FAQs to find answers to commonly raised questions by patients and organizations regarding the Autoimmune COVID-19 project.

Frequently asked questions by patients

What is the Autoimmune COVID-19 Project?

The COVID-19 Project is a project of the Autoimmune Research Collaborative, including ArthritisPower, the Vasculitis Patient-Powered Research Network (VPPRN), Inflammatory Bowel Disease Partners (IBD Partners), and iConquer MS.Registry to understand the COVID-19/the novel coronavirus related concerns and behaviors of people living with autoimmune and inflammatory conditions. Over time, the study aims to examine the concerns and behaviors of patients with autoimmune, rheumatic, and related conditions during the COVID-19 pandemic and to collection information from patients about illness and testing.

Who else is involved in the Project?

This study is a collaboration between the Global Healthy Living Foundation (GHLF), and partnering autoimmune patient research networks from the Autoimmune Research Collaborative (ARC). ARC is comprised of four Patient-Powered Research Networks (PPRNs) working together to conduct patient-centered research in adult autoimmune conditions: the ArthritisPower® Research Registry, IBD Partners, iConquerMS™ and the Vasculitis Patient-Powered Research Network. Individual ARC networks are supported and coordinated by patient organizations including Accelerated Cure Project, CreakyJoints, Crohn’s & Colitis Foundation, the Vasculitis Foundation, and affiliated academic institutions including the University of Alabama at Birmingham, the University of North Carolina at Chapel Hill and the University of Pennsylvania. ARC advances patient-centered outcomes research, and comparative effectiveness and pragmatic research, in autoimmune and systemic inflammatory diseases. ARC is co-led by W. Benjamin Nowell, PhD, GHLF, and Peter Merkel, MD, MPH, University of Pennsylvania.

We are also collaborating with other U.S. and Canadian patient groups for this study.

Who is funding the Project?

GHLF and other ARC networks are currently supporting the study with existing infrastructure. However, ongoing funding is needed to support the project. We are inviting funders and investors to consider supporting our efforts to build and sustain this patient-centered activity in response to the coronavirus public health emergency. There is a need for this type of registry to give voice to the patient experience.

How can my I participate in the Project?

To participate, you will be asked to share your email with the study team when you visit the study webpage. You will receive an invitation to take a survey, the first one in a series of surveys that we will send to you every two weeks for the next 2 months and then again at 6 and 12 months. Each survey will take less than 10 minutes to complete. You may choose to withdraw your participation at any time. There will be no negative consequences should you decide to withdraw at any time.

Our hope is that by understanding the information that you provide over time we can better understand the impacts of COVID-19 on people like you who are living with an autoimmune, rheumatic or related condition.

Am I eligible to participate?

This study is for people living with an autoimmune, rheumatic or related condition. In order to confirm eligibility to participate in this study please visit autoimmunecovid.org and choose one of the patient-powered research networks that best fits your autoimmune or related conditions. To participate you must be 19 years or older (or 21 years of age in Puerto Rico)

I am not a U.S. or Canadian resident or citizen. Can I still participate?

Currently, this study is being conducted for United States, its territories and Canadian residents only.

Will the information I share be disclosed publicly?

Your information will be private. You will not be personally identified in any publications or information made public about this study. Only de-identified information will be used. This means the information you share will remain anonymous in any publications or reports.

How will the information I provide benefit myself and others?

While there is no immediate direct benefit to individual participants in the study, there is the possibility of considerable potential benefit to future patients with autoimmune and inflammatory or related diseases, as this study may help provide information to clinicians and patients about patient perceptions, behaviors and concerns regarding the novel coronavirus, risks of different immunosuppressive treatment, incidence and prevalence of the COVID-19 infection in patients with autoimmune and related diseases. Thus, this study may ultimately help optimize patient support and shared decision making about the management and treatment of autoimmune and related diseases in the context of an infectious disease pandemic. Since this is a novel coronavirus, this will greatly contribute to advancing our understanding of these issues

What are some of the research questions this study will answer?

This study may help provide information to clinicians and patients about patient perceptions, behaviors and concerns regarding the novel coronavirus. Following are some of the questions that this study aims to answer:

  • How concerned are patients about COVID-19 and how much do they think their autoimmune disease impacts this concern?
  • Does this differ by disease and by what medications patients are on?
  • How frequently are patients with autoimmune disease and respiratory illnesses being tested for COVID-19?
  • What is the impact of COVID-19 on autoimmune disease treatment/health behaviors (stopping medications, infusions, office visits, testing)?
  • What is the availability of telehealth for patients and how are patients getting information about COVID-19?
Has the COVID-19 Project/study undergone review by an Institutional Review Board (IRB) for the protection of patients participating in human subjects’ research?

Yes. We have received approval for this study under Advarra, our external, independent IRB. An institutional review board (IRB) is an independent committee established to help protect the rights of research subjects.

Who should I contact for more information?

If you have any questions, we are happy to address them via email or phone.; Please contact Shilpa at or (646) 427-7891. Thank you for your interest.

Frequently asked questions by organizations

What is the Autoimmune COVID-19 Project?

The COVID-19 Project is a project of the Autoimmune Research Collaborative , including ArthritisPower, the Vasculitis Patient-Powered Research Network (VPPRN), Inflammatory Bowel Disease Partners (IBD Partners), and iConquer MS, to understand the COVID-19 related concerns and behaviors of patients with autoimmune and inflammatory conditions. Over time, the study aims to examine the concerns and behaviors of patients with autoimmune, rheumatic, and related conditions during the COVID-19 pandemic and to collection information from patients about illness and testing.

Who else is involved in the Project?

This study is a collaboration between the Global Healthy Living Foundation (GHLF), and partnering autoimmune patient research networks from the Autoimmune Research Collaborative (ARC). ARC is comprised of four Patient-Powered Research Networks (PPRNs) working together to conduct patient-centered research in adult autoimmune conditions: the ArthritisPower® Research Registry, IBD Partners, iConquerMS™ and the Vasculitis Patient-Powered Research Network. Individual ARC networks are supported and coordinated by patient organizations including Accelerated Cure Project, CreakyJoints, Crohn’s & Colitis Foundation, the Vasculitis Foundation, and affiliated academic institutions including the University of Alabama at Birmingham, the University of North Carolina at Chapel Hill and the University of Pennsylvania. ARC advances patient-centered outcomes research, and comparative effectiveness and pragmatic research, in autoimmune and systemic inflammatory diseases. ARC is co-led by W. Benjamin Nowell, PhD, GHLF, and Peter Merkel, MD, MPH, University of Pennsylvania.

We are also collaborating with other U.S. and Canadian patient groups for this study.

Who is funding the Project?

GHLF and other ARC networks are currently supporting the study with existing infrastructure. However, ongoing funding is needed to support the project. We invite funders and investors to consider supporting our efforts to build and sustain this patient-centered activity in response to the coronavirus public health emergency. There is a need for this type of registry as evidenced by the speed with which this one has been built to give voice to the patient experience.

How can my institution/organization participate in the Project?

If your organization would like to participate in this project, you may choose from the survey administration and data management options below.

  • GHLF can administer the survey and host the data for your organization using our HIPAA-compliant SurveyMonkey platform. In this scenario, GHLF would generate a large number of custom survey links that you can send via email to individual patient members within your network. This option will require follow-up emails to be sent by your institution at specified intervals (2 weeks, 4 weeks, 6 weeks, 8 weeks, 6 months, and 12 months post-baseline ).We would administer the survey in such a way as to not have access to any of your members’ Personally Identifying Data (PII), such as email address, but we would store and have access to all de-identified data for analysis purposes. We would also send you data from your patient members twice each month with unique IDs that only you would be able to match up to specific individuals. Under this option, we would need to effectuate a Data Use Agreement (DUA) with your organization.
  • We will provide you with the survey items and branching logic we created so you can program and administer the survey using your own institutional infrastructure. To conduct collaborative analysis of the data later, you would need to share de-identified survey data back with GHLF or with an honest broker (third party) who would conduct the agreed upon data analysis. 
  • We will ask you to direct your patient members to the Autoimmune COVID-19 Project homepage (AutoimmuneCOVID.org) where people can sign up for the survey by providing an email address. GHLF would then send custom invitations and track survey completion internally.
How long would I/ my organization need to participate in the Project?

We will continue this study for 1 year (i.e. every 2 weeks for 8 weeks, then at 6 months and 12 months). We anticipate that the Project will continue for up to 2 years, including analysis and publication.

What are some of the research questions this study will answer?
  • This study may help provide information to clinicians and patients about patient perceptions, behaviors and concerns regarding the novel coronavirus. Following are some of the questions that this study aims to answer:
  • How concerned are patients about COVID-19 and how much do they think their autoimmune disease impacts this concern?
  • Does this differ by disease and by what medications patients are on?
  • How frequently are patients with autoimmune disease and respiratory illnesses being tested for COVID-19?
  • What is the impact of COVID-19 on autoimmune disease treatment/health behaviors (stopping medications, infusions, office visits, testing)?
  • What is the availability of telehealth for patients and how are patients getting information about COVID-19?
Has the COVID-19 Project/study undergone review by an Institutional Review Board (IRB) for the protection of patients participating in human subjects research?

Yes. We have received approval for this minimal risk study under Advarra, our external, independent IRB. Your organization is welcome to work under the same IRB-approved protocol using either of two options:

  • We can work with you to submit an amendment to this survey so you can add questions that may be of specific relevance to your patient population. In this case you would need to sign a reliance agreement between your institutional IRB and Advarra.
    OR
  • You are welcome to submit an amended protocol to Advarra for review under a new Principal Investigator (PI) from your institution.
Who should I contact for more information?

If you have any questions, we are happy to address them via email or phone. Please contact Shilpa at or (646) 427-7891. Thank you for your interest.