Join and get access to the Video Library, Literature Central and to the Blog which more than doubles the size of the public website. In addition, you will get access to a members only Forum where you can exchange your thoughts and experiences with other members. For more information please click on this link Members Forum
Smart Phone RA App Survey
The European League Against Rheumatism (EULAR) is the organisation which represents the people with arthritis/rheumatism, health professionals (HPR) and scientific societies of rheumatology of all the European nations. The aims of EULAR are to reduce the burden of rheumatic diseases on the individual and society and to improve the treatment, prevention and rehabilitation of musculoskeletal diseases.
EULAR researchers have asked Dragon Claw members to participate in an online survey aimed at developing further research in mobile health applications for self-management in patients with rheumatic diseases.The following survey link is designed to gain insight into patient's views, perceptions and current use of mobile health apps for self-management. The survey is being supported by Professor Francis Berenbaum , Head of the Department of Rheumatology, Sorbonne Université
The survey information is confidential to EULAR and will take between 5 to 10 minutes to complete. If you wish to participate please click on this link.
You are invited to participate in an important online study about the effects of glucocorticoids (also known as steroids) and which of these effects are most important to you. This research is being led by the Glucocorticoid Impact Special Interest Group of Outcome Measures in Rheumatology OMERACT, an international initiative of health professionals established in 1992 to improve outcome measurement in rheumatology. We seek your help in making sure the measure addresses the concerns and experiences of people living with rheumatic disease.
OMERACT values your participation, which is completely voluntary. If you agree to participate, you will be asked to take a survey lasting 10-20 minutes. No individual data will be identified. To qualify for the research, you must be an adult, age 18 or over, and be currently taking or have previously taken tablet glucocorticoids (for example, prednisolone or prednisone). Click here to participate
Thanks for considering participating in this important research,
Prof Catherine Hill MBBS MD MSc FRACP
Director, Rheumatology Unit, The Queen Elizabeth Hospital
Staff Specialist, Royal Adelaide Hospital
Clinical Professor, University of Adelaide
Chair, South Australian Medicine Evaluation Panel
Rheumatology Unit | The Queen Elizabeth Hospital | CALHN
Pain Research Centre
“At the end of the day, lower back pain is more than just a pain in the back for so many Australians. Six million Australians have impacts on their quality of life, on their ability to work, and of course chronic pain can contribute to mental health impacts.” Hon Greg Hunt, Minister for Health
For the first time Australia will have a research centre dedicated to arthritis and musculoskeletal conditions. Back pain alone accounts for more than 40 percent of forced early retirements in Australia and is associated with poor quality of life, lower income and mental health issues. Low back pain is the leading cause of disability globally.
The NHMRC Centre for Research Excellence for the Australia and New Zealand Musculoskeletal (ANZMUSC) Clinical Trials Network, based at the Cabrini Institute at Monash University in Melbourne, will advance research and will enable clinicians, researchers and consumers to work together to deliver better treatments and outcomes for people with musculoskeletal conditions. The centre will collaborate with 23 universities, 21 hospitals and 10 research institutes. It will work closely with consumers and consumer organisations to shape its research agenda, and with policy makers to ensure that discoveries are rapidly translated into improved care.You can access the ANZMUSC here
If you are a patient you may get paid to attend or present at a conference
For example, The International Forum on Quality and Safety in Healthcare will be meeting in Amsterdam over 2-4 May and in Melbourne over 10-12 September this year. If you want to get involved, have an opinion and lack the funds you should approach the organisers here.
Dragon Whispers and Conversations
A new menu item has been added under Here To Help. Have a look and enjoy.
The Manifesto Of The Patient Revolution
The Patient Revolution is, at its heart, a movement based on stories. This website and publication tries to arm people to tell stories; stories about their lives, stories about their capabilities and limitations, and stories about what risks, benefits and trade-offs look like from their point of view. In a series of brief and personal essays, Why We Revolt describes what is wrong with industrial healthcare, how it has corrupted its mission, and how it has stopped caring. Dragon Claw is about patient centricity and self help so we thought this publication may be of interest to some members and visitors. You can Subscribe here
The Dragon Invited to be Part of A3BC
Despite major medical advances in treatment, not all people respond, many develop significant side effects, and there remain no cure or prevention for arthritis and musculoskeletal (MSK) conditions. The Australian Arthritis and Autoimmune Collaborative (A3BC) was formed in 2016 by leading Rheumatology clinicians and scientists from over 40 sites across Australia to enable world-class translational research. The A3BC vision is to give the right treatment at the right time for the best possible outcomes in children and adults with arthritis/MSK conditions across their lifespan and, ultimately, to find a cure.
We are very proud to be part of this initiative and as things develop will keep members informed.
Don't miss our extensive video collection under the main menu - Video Library. The content covers everything from gut bugs to hand exercises. New videos are added monthly.
ARAD is a national Australian database which collects important health information from individuals with inflammatory arthritis. If you would like to participate in the survey Go Here and look for ARAD bottom left.
OMERACT - Outcome Measures in Rheumatology - will be holding it world conference in Terrigal, NSW in 2018.
Want to learn about your condition but can't read scientific articles? No problem. Dragon Claw provides short simple summaries of some of the best and makes them available just for you the Member under the sub-menu item Quick Reads.
As you move through the site and its many sections you will notice unusual art works, usually at the top of each main section. More will be added as time goes by. These images are street art from Sydney, Australia. We are using these images (with permission) to make the site distinctive and memorable. We particularly wanted to move away from clinical images and happy smiling faces which are so routine these days. Hope you like the images.