Month: April 2020

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.

Walk Your AS Off is a virtual walk event to get moving and raise awareness for axial spondyloarthritis.

We encourage you to  “Walk Your A.S. Off!” in order to stay active and to keep your joints working as well as possible.

Most people with axSpA benefit from regular exercise. Unfortunately, many of us don’t exercise enough.

Walking is a fantastic form of low impact exercise – so let’s get moving!

Join our global community – there are teams from all over the world! You can participate as an individual or create your own virtual team and start counting and logging your steps.

We know that the current situation is difficult and not ideal for long walks but even walking around the block just to keep moving will be perfect!

For more details on: Why do we Walk? Who can participate? Why have teams? How do I sign up? How can I make a team? When do I log steps? How can I find out more information? and Resources

For more information and how to take part in this event see asif.info/what-is-walk-your-as-off/

More useful suggestions for Covid-19 distancing here below

In order to help everybody, members and researchers have created detailed pages on their websites as a support during these extreme times. We hope they can contribute to ease the pressure by becoming a powerful tool helping to spread knowledge. Here below you will find links to specific pages.

NASS the National Axial Spondyloarthrithis Society in England presents: a low, medium and high risk assessment to give another tool.

Medicines and Biologic therapies with: highlights on Glucocorticoids, Conventional DMARDs, Non-steroidal anti inflammatory drugs (NSAIDs) and Biologic therapies in relation to covid-19 .

For Mental Health support see the section on how to manage

Rheumatologist and spondyloarthritis expert  Dr. John Reveille, Chief of Rheumatology focuses on if having Axial Spondyloarthritis put you at greater risk for Covid-19 ?

For more detailed aspects in terms of conduct, prevention, safety, state of research as per CDC and mind-body relaxation techniques see the question and answers section

EULAR

In light of the ongoing situation around COVID-19, EULAR has taken the following actions:

• A Video on guidance for patients about COVID-19
• Communication to policy audiences at EU level / Brussels 

The policy statement and the video are for use by EULAR Member organisations at their discretion.

EULAR Guidance for patients about COVID-19
How to use the guidance video:
Translate

• Video and text available here a guidance for patients
• The video is hosted on the EULAR YouTube channel: https://youtu.be/RcI8S0qeqVY
• Text for translation: See pdf and word documents attached
• The text can be translated in either written format to accompany the video, or placed in the video directly
• The written format can be placed with the video on a website page, or produced in a Word or pdf document for circulation together with the website link
• Please do not use the EULAR logo on your webpage or in any documentation you produce around the translation
• Please refer to EULAR in writing only, using the following sentence: ‘Translated from the original version in English produced by the European League Against Rheumatism, EULAR, March 2020’
• If the video is required in original format to embed the subtitles, please contact communications@eular.org

• Disclaimer: The disclaimer is embedded in the video and does not need to be translated
• If you have further questions, please contact communications@eular.org

SHARE Video available on EULAR social media channels:

• Twitter @eular_org https://twitter.com/eular_org
• Facebook @eular.org https://www.facebook.com/eular.org/
• LinkedIn EULAR https://www.linkedin.com/company/eular
• YouTube EULAR https://youtu.be/RcI8S0qeqVY

Branding
The EULAR Guidance for patients about COVID-19 is an official EULAR product and may only be used in line with the guidelines set out above.

EULAR Policy statement and specific questions around COVID-19

If your organisation requires further information regarding topics mentioned in the policy statement, please contact publicaffairs@eular.org

Novartis believe it is vital to provide enhanced funding to help patient communities globally impacted by the outbreak to provide vital services to patients. Novartis will prioritize funding requests addressing immediate needs of patients stemming from the pandemic. As examples, we will consider proposals for programs that:

• Provide information on COVID-19 or related topics.
• Enable patients to access their HCP online or virtually, to ensure continuity of care and disease monitoring, remotely.
• Deliver support to manage incremental demand of calls related to COVID-19 and disease management (call centers enhancement).
• Facilitate digital approaches for patients and caregivers support and education as well as program that strengthen the community’s digital capabilities to reach patients.

If resources are needed for Covid-19 related programs such as those above, please reach out to your local Novartis patient advocacy contact who will manage – if you need help to find out who that is, please contact Jo Davies on office@asif.info

If you wish to find more information about how Novartis is working during this time, please visit Novartis

Boehringer Ingelheim said more information about their clinical trials is available as well as an update about their contribution to fighting COVID-19 They are also providing under publicly available information which has been developed by Patient Organisations, Scientific Societies, governmental and non-governmental organisations in different countries about the virus which you or your community might find helpful.

The UCB contact to use for any questions or concerns patients from your community may have, is provided through the UCB Cares service GlobalMI-Content@ucb.com

Save the date, May 1-7, 2020

Registration is now open for the Global Spondyloarthritis Summit 2020

Save the dates, 1-7 May 2020, for the SAA’s 2nd Annual Global Spondyloarthritis Summit.  This year’s virtual Summit will feature 12 international experts presenting on topics such as pain management, advances in treatment options, diet & nutrition, exercise, progress in research, medicinal cannabis, and more.

There is no cost to register and participation is strongly recommended for anyone impacted by axial spondyloarthritis, whether it is you or a loved one.

This year the videos will come with subtitles in the following languages:  Spanish, Ukranian, French, Italian, Bulgarian, Russian and Chinese.

Register here