PRESS-NEWS.org - Press Release Distribution
PRESS RELEASES DISTRIBUTION

Survey now open: EULAR invites patients across Europe to participate in groundbreaking study on rheumatic and musculoskeletal diseases

2024-06-14
(Press-News.org) People living with RMDs can now fill out the survey online, sharing their experiences to help build a comprehensive understanding of their disease's impact. The data collected will be invaluable for researchers, healthcare professionals, and patients themselves, providing insights into the burden of RMDs and identifying areas for improvement in care.

 

EULAR is committed to inclusivity and accessibility; the survey will soon be available in multiple European languages in addition to English. This ensures that a diverse range of patients can contribute their perspectives, enhancing the richness and applicability of the data.

 

Participants will answer a baseline survey covering demographic information, RMD diagnosis, and its effects on their quality of life. Follow-up surveys will be conducted bi-annually to track changes over time, supplemented by additional disease-specific questionnaires as needed. All collected information will be de-identified to maintain patient privacy in compliance with data protection regulations.

 

EULAR encourages all individuals living with RMDs to take part in this important survey and urges healthcare professionals to promote participation among their patients. For more information and to participate in the survey, please visit our website.

 

About EULAR

EULAR is the European umbrella organisation representing scientific societies, health professional associations and organisations for people with rheumatic and musculoskeletal diseases (RMDs). EULAR aims to reduce the burden of RMDs on individuals and society and to improve the treatment, prevention and rehabilitation of RMDs. To this end, EULAR fosters excellence in education and research in the field of rheumatology. It promotes the translation of research advances into daily care and fights for the recognition of the needs of people with RMDs by the EU institutions through advocacy action.

 

 

Contact

EULAR Communications, communications@eular.org  

 

Notes to Editors

EULAR Impact of RMDs Survey | EULAR

EULAR Recommendations

EULAR School of Rheumatology

EULAR Press Releases

 

 

 

 

 

 

 

 

 

 

END


ELSE PRESS RELEASES FROM THIS DATE:

EULAR launches the EULAR Network of Trial Centres (ENTRI), a unique initiative transforming the way clinical trials are delivered

2024-06-14
ENTRI aims to:  Create a network of clinical trial centres, accessible to all investigators and sponsors from both public and private sectors. Build capacity and training in clinical trials and experimental medicine studies. Provide RMD-related clinical trials toolkits underpinned by best practice.   By facilitating the delivery of incisive research trial studies, ENTRI helps generate the evidence required to implement changes in clinical practice that are meaningful and beneficial to patients. ENTRI members will be invited to participate in cutting-edge projects sponsored by both public and private sectors. Facilitating faster translation of results into ...

Could interferon signature aid in the diagnosis and stratification of pediatric Sjögren’s?

2024-06-14
Sjögren’s disease is rare in children, and presenting symptoms differ from those seen in adults. For example, paediatric patients present less often with sicca complaints, and more frequently with parotid gland swelling and fever.1 This new work aimed to identify potentially dysregulated molecular pathways in children with Sjögren’s disease by comparing the transcriptome of peripheral blood cells between 18 patients and 23 controls – using differential gene expression and pathway analysis. In addition to whole transcriptome analysis of blood samples, expression of interferon-stimulated genes (ISG) was measured in paired ...

Putting rheumatic and musculoskeletal diseases (RMDs) at the forefront of the next European Union healthcare agenda

2024-06-14
Why are RMDs an issue for Europe? RMDs, often dubbed 'the invisible diseases', affect approximately 120 million Europeans, constituting one in five individuals across the continent. Despite their prevalence, there remains a significant lack of awareness among policymakers and the general public, leading to their frequent neglect in political and financial agendas. However, the impact of RMDs is far-reaching, contributing to physical disability, chronic health conditions, and substantial economic burdens, amounting to an estimated 240 billion Euros annually. Furthermore, RMDs not only pose a direct threat to individual health but also contribute to the ...

Tackling issues in childhood arthritis

2024-06-14
Community awareness that children and young people get arthritis is low.1 This is associated with delays in diagnosis, worse clinical outcomes, and adverse societal factors such as stigma and isolation. Raising awareness of childhood arthritis is crucial in combatting these issues to improve the lives of those living with JIA. An abstract plenary session at the 2024 EULAR congress shared work from Juvenile Arthritis Research – a patient organisation in the UK that is involved in a variety of projects to raise awareness and support JIA patients and their families. These include a variety ...

Predictors for organ damage

2024-06-14
cSLE is a rare multisystem disorder with significant associated morbidity, but evidence-based guidelines are sparse, and as such management is often based on clinical expertise.2 The EULAR/ACR-2019 criteria have shown sensitivity in cSLE patients, which could allow earlier recognition of patients with single or major organ involvement,3 but identifying specific predictors in this vulnerable group is vital for preventing long-lasting damage.   The new work, presented at the 2024 EULAR congress, aimed ...

Osteoarthritis: associations and comorbidities

2024-06-14
In the 2023 update of their recommendations for osteoarthritis management, EULAR – The European Alliance of Associations for Rheumatology – recognise osteoarthritis as a severe disease, and one with important implications for both the individual and society.3 However, most people with osteoarthritis do not receive optimal management,4,5 and this represents an important unmet need – especially when considering additional systemic comorbidities. To explore this further, ComOA6 has combined case-control and cohort studies for over 3 million people in primary care in the UK, Netherlands, Sweden, and Spain. The analyses – shared at ...

High-precision measurements challenge our understanding of Cepheids

High-precision measurements challenge our understanding of Cepheids
2024-06-14
“Classical Cepheids” are a type of pulsating star that rhythmically brightens and dims over time. These pulsations help astronomers measure vast distances across space, which makes Cepheids crucial “standard candles” that help us understand the size and scale of our universe. Despite their importance, studying Cepheids is challenging. Their pulsations and potential interactions with companion stars create complex patterns that are difficult to measure accurately. Different instruments and methods used over the years have led to inconsistent data, ...

New approach to identifying altermagnetic materials

New approach to identifying altermagnetic materials
2024-06-14
Magnetic materials have traditionally been classified as either ferromagnetic, like the decorative magnets on iron refrigerator doors that are seemingly always magnetic, or antiferromagnetic, like two bar magnets placed end-to-end with opposite poles facing each other, canceling each other out so that the material has no net magnetism. However, there appears to be a third class of magnetic materials exhibiting what in 2022 was dubbed altermagnetism. Microscopically, magnetism arises from a collection of tiny magnets associated with electrons, ...

Is magnesium the sleeping potion that enables sandhoppers to survive cold winters?

Is magnesium the sleeping potion that enables sandhoppers to survive cold winters?
2024-06-14
Magnesium compounds are a common ingredient of many remedies designed to help people wind down and escape the stresses of modern life. However, a new study has shown it is not only humans that are using forms of the chemical as a way to help them survive challenging conditions. In tests conducted on beaches in Cornwall, and in the laboratory at the University of Plymouth, scientists confirmed the findings of previous studies which showed large sandhoppers (Talitrus saltator) increase the levels of magnesium ions in their bodies as temperatures fall. This slows them down so they are less active than they would be during the warmer months. However, the new study has shown for the first time ...

Report highlights trajectory challenges for women in elite football

2024-06-14
Report highlights trajectory challenges for women in elite football       A new report commissioned by the Fédération Internationale de Football Association (FIFA) and Fédération Internationale des Associations de Footballeurs Professionnels (FIFPRO), undertaken by Edith Cowan University (ECU), surveyed footballers across 12 countries in six confederations. More than 700 players participated in the survey, with 71.5% classifying themselves as professional, with a further ...

LAST 30 PRESS RELEASES:

Models predict severity of pneumonia in kids to help guide treatment

Mindfulness course effective in people with difficult-to-treat depression

Insurer exits after the Inflation Reduction Act Part D redesign

Researchers gain insights into the brain’s ‘dimmer switch’

Brain scans reveal what happens in the mind when insight strikes

Loss of Medicare Part D subsidy linked to higher mortality among low-income older adults

Persistent mucus plugs linked to faster decline in lung function for patients with COPD

Incomplete team staffing, burnout, and work intentions among US physicians

The key to spotting dyslexia early could be AI-powered handwriting analysis

New nanoparticle could make cancer treatment safer, more effective

A new study provides insights into cleaning up noise in quantum entanglement

Artificial intelligence and genetics can help farmers grow corn with less fertilizer

Daratumumab may help cancer patients with low physical function to live longer, study finds

Stranger things: How Netflix teaches economics

Energy and memory: A new neural network paradigm

How we think about protecting data

AAN issues Evidence in Focus article on Duchenne muscular dystrophy gene therapy

Could a mini-stroke leave lasting fatigue?

Is it time to redefine the public health workforce? New research proposes a broader, more inclusive approach

Tiny gas bubbles reveal secrets of Hawaiian volcanoes

Gelada monkeys understand complex "conversations" involving distress calls and prosocial comforting responses, exhibiting surprise when such vocal exchanges are manipulated to violate their expectatio

New poison dart frog discovered in the Amazon's Juruá River basin is blue with copper-colored legs, and represents one of just two novel Ranitomeya species in a decade

Shifting pollution abroad is a major reason why democratic countries are rated more environmentally friendly compared to non-democratic states

Groups of AI agents spontaneously form their own social norms without human help, suggests study

Different ways of ‘getting a grip’

Handy octopus robot can adapt to its surroundings

The ripple effect of small earthquakes near major faults

Mass General Brigham researchers pinpoint ‘sweet spot’ for focused ultrasound to provide essential tremor relief

MRI scans could help detect life-threatening heart disease

NASA’s Magellan mission reveals possible tectonic activity on Venus

[Press-News.org] Survey now open: EULAR invites patients across Europe to participate in groundbreaking study on rheumatic and musculoskeletal diseases