ASIF/SAA axSpA and COVID-19 Survey

You can take part in critical research on COVID-19 in Axial Spondyloarthritis! We need as many people to take part as possible.

There are too many uncertainties around what effect, if any, having axial spondyloarthritis may have on the pandemic currently encircling us.  Too many uncertainties around the possible impact of medications.

We need to act now; we need to act fast to find concrete answers for our community and we need your help to build a COVID-19 in Axial Spondyloarthritis Registry.

We need your help to track how COVID-19 is impacting our community, and learn more about any possible impact axial Spondyloarthritis, and medications used for spondyloarthritis, may have on COVID-19. Please, take some time now (10-15 minutes) and be a part of this important research.

The Spondylitis Association of America (SAA) in partnership with the Axial Spondyloarthritis International Federation (ASIF) are pleased to invite you to participate in a COVID19 in Axial Spondyloarthritis survey.  SAA has worked closely with members of their Medical and Scientific Advisory Board and is spearheading research into the possible impact axial spondyloarthritis, and medications used for axial spondyloarthritis, may have on COVID-19. 

We have made a good start, but we need more responses, the more responses we have, the better the data. 

• This is the only survey which is specifically researching axSpA. 
• This survey also invites household members to take part to create a control group – so important for data to be scientifically analysed.

Please help us to invite your members to take part in this critical study.

From experience, we know that the way to encourage the best response rate, is to create a unique link to send to each member.  If you would like to use that method.  Please contact Valeria on admin@asif.info and she will let you know what to do next.

If you would prefer, you can simply circulate the link and/or QR code below to your members by email and via social media. 

To take part click here or point your phone camera at this QR code:

Example Social Media posts (more can be found here):

FACEBOOK:

Make your voice heard in the ONLY survey studying the effects of COVID-19 specifically on the #spondylitis community. Close to 4,000 people have already contributed, and we want to hear from you, too! It only takes 10-15 minutes, and your input will help researchers find critical answers for our community. Begin the survey here: PS: You do NOT have to have contracted COVID-19 to take part.

TWITTER:

Make your voice heard in the ONLY survey studying effects of #COVID19 on the SpA community. Close to 4,000 people have contributed. We want to hear from you! You DON’T have to have COVID-19 to take part. Your input is vital! https://tinyurl.com/spasu

Some details:

Who is eligible to take part?

• We are currently looking for those with a diagnosis of spondyloarthritis made by a physician (those with ankylosing spondylitis, non-radiographic axial spondyloarthritis, psoriatic arthritis, arthritis with inflammatory bowel disease, peripheral spondyloarthritis, undifferentiated spondyloarthritis, reactive arthritis, or juvenile spondyloarthritis.)

• You can also refer your household members (to act as a control group for the survey.)

• This survey is open to people throughout the world, and we urge everyone who is eligible to take part.

What is my time commitment should I decide to take part?

• The initial time commitment is an estimated 10-15 minutes for the current survey. Four weeks after you complete this first survey, you will be asked to complete a follow up survey. We will continue to ask for your permission to contact you again every four weeks, for the next six months. You can, of course, opt out at any time.

Who are the professionals guiding this research?

• This survey has been developed and is being managed by a dream team of passionate and committed investigators, including patients and renowned researchers, such as Dr. James Rosenbaum, Dr. John Reveille, Dr. Kevin Winthrop, and Dr. Michael Weisman. All are experts in the area of rheumatology or infectious diseases.
• We extend our deep thanks to any-3 Ltd for providing their technical expertise and support, and addressing with great care and professionalism our needs, and those of our community.

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