A5089704492- Salivary Gland Disorders and Functions
- Systemic Sclerosis and Related Diseases
- Inflammatory Myopathies and Dermatomyositis
- Fibromyalgia and Chronic Fatigue Syndrome Research
- Systemic Lupus Erythematosus Research
- Renal Diseases and Glomerulopathies
- Dupuytren's Contracture and Treatments
- Healthcare Regulation
- Mental Health and Patient Involvement
- Interprofessional Education and Collaboration
- Celiac Disease Research and Management
- Autoimmune and Inflammatory Disorders Research
- Healthcare Systems and Technology
- Connective tissue disorders research
- Hypertrophic osteoarthropathy and related conditions
- Parkinson's Disease and Spinal Disorders
- Youth, Drugs, and Violence
- Diabetes and associated disorders
- Heparin-Induced Thrombocytopenia and Thrombosis
- Genetic Syndromes and Imprinting
- Prenatal Screening and Diagnostics
- Parasitic Diseases Research and Treatment
- Inflammasome and immune disorders
- Health Services Management and Policy
- Mobile Health and mHealth Applications
Portuguese League Against Epilepsy
2018-2024
Iscte – Instituto Universitário de Lisboa
2023
Systemic sclerosis (SSc) is an orphan disease characterised by autoimmunity, fibrosis of the skin and internal organs, vasculopathy. SSc may be associated with high morbidity mortality. In this narrative review we summarise results a systematic literature research, which was performed as part European Reference Network on Rare Complex Connective Tissue Musculoskeletal Diseases project, aimed at evaluating existing clinical practice guidelines or recommendations. Only in domains ‘Vascular...
Background Since the publication of 2011 European Alliance Associations for Rheumatology (EULAR) recommendations patient research partner (PRP) involvement in rheumatology research, role PRPs has evolved considerably. Therefore, an update was deemed necessary. Methods In accordance with EULAR Standardised Operational Procedures, a task force comprising 13 researchers, 2 health professionals and 10 convened. The process included online meeting, systematic literature review in-person second...
Mixed connective tissue disease (MCTD) is a complex overlap with features of different autoimmune diseases (CTDs) namely systemic sclerosis, poly/dermatomyositis and lupus erythematous in patients antibodies targeting the U1 small nuclear ribonucleoprotein particle. In this narrative review, we summarise results systematic literature research which was performed as part European Reference Network on Rare Complex Connective Tissue Musculoskeletal Diseases project, aimed at evaluating existing...
Abstract Background Rare and complex diseases can have a significant impact on family life, managing the reproductive aspects of patients childbearing age with rare is often difficult complex. A European Reference Network (ERN) Transversal Working Group (WG) Pregnancy Family Planning was created to join forces promote address issues these topics in low-prevalence diseases. Objective To outline challenges good practices related pregnancy planning for healthcare professionals (HCPs). Methods...
Antiphospholipid syndrome (APS) is a rare disease characterised by venous and/or arterial thrombosis, pregnancy complications and the presence of specific autoantibodies called antiphospholipid antibodies. This review aims to identify existing clinical practice guidelines (CPG) as part ERN ReCONNET project, aimed at evaluating CPGs or recommendations in complex diseases. Seventeen papers providing important data were identified; however, literature search highlighted scarceness reliable...
Sjögren’s syndrome (SS) is a complex autoimmune rheumatic disease that specifically targets salivary and lachrymal glands. As such, patients typically had ocular oral dryness gland swelling. Moreover, skin, nasal vaginal are frequently present. In addition to dryness, musculoskeletal pain fatigue the hallmarks of this constitute classic symptom triad presented by vast majority patients. Up 30% 50 % with SS may present systemic disease; moreover, there an increased risk for development...
Introduction The European Reference Network (ERN) ReCONNET is the ERN aimed at improving management of rare and complex connective tissue musculoskeletal diseases (rCTDs) across Union (EU). In mission ReCONNET, clinical practice guidelines (CPGs) play a crucial role, representing valid tool towards harmonisation rCTDs while effectiveness quality care delivered to patients. Methods developed two surveys map adherence CPGs among healthcare providers assess knowledge awareness for their...
Objective The European Reference Network on Rare and Complex Connective Tissue Musculoskeletal Diseases involves health care providers (HCPs) from 8 countries 7 patients’ representatives of Patient Advocacy Groups. objective was to evaluate current practice unmet needs for patient education (PE) in Europe. Methods A questionnaire sent HCP members asking about the PE practices another, enquire their needs, associations different countries. Results completed by 33 HCPs. Half had no specific...
<h3>Background:</h3> Among systemic manifestations of Sjögren disease (SD) those related to the nervous system severely affect patient's quality life but remain a clinical challenge due difficulty SD attribution and limitations/lack access diagnostic procedures. patients perceive recognising managing neurological as major unmet need. <h3>Objectives:</h3> To explore perspective individual experience with regarding symptoms <h3>Methods:</h3> An anonymous online survey targeting or without was...
<h3>Background:</h3> Gout is one of the most common form inflammatory arthritis in Europe, but awareness it relatively low. There limited information available about impact gout on patients, and more generally society. <h3>Objectives:</h3> To give patients a voice to better understand that disease has their lives. <h3>Methods:</h3> From June September 2018, from 14 European countries were invited complete 15 minutes online survey. Adult (18+) diagnosed with who met criteria finished survey...
<h3>Background</h3> The European Reference Network on Rare and Complex Connective Tissue Musculoskeletal Diseases (ERN ReCONNET) is a virtual that aims to improve standardize the quality of care offered rCTDs patients in Europe, empower patients, share knowledge expertise, enhance research, support efficient use resources. ERN ReCONNET covers 10 rCTDs: APS, UCTD, Idiopathic Inflammatory myopathies, IgG4, MCTD, Systemic sclerosis, Relapsing Polychondritis, SLE, Sjogren EDS....
<h3>Background</h3> Patients & their representatives are an important stakeholder in healthcare discussions. However, these individuals sometimes lack the appropriate knowledge training to fully contribute decision-making. The Sjogren's community Europe is represented by groups of various capacities expertise at country level but with large national disparities. Sjögren Europe, European Federation associations representing Sjögren's patients, seeks support as widely possible its members...
<h3>Background</h3> In recent years, rheumatology research focused on first-degree relatives of people with rheumatic diseases, mainly rheumatoid arthritis, since they have a higher risk developing the disease compared general population and offer potential source insight into preclinical phase disease. However, evidence Sjögren's syndrome is still lacking. <h3>Objectives</h3> To explore perspective SS inform Pre-Sjögren's Syndrome Targeted Immunology Evaluation (PreSStige) study, conducted...
<h3>Background</h3> Despite its considerable prevalence among CTDs, SS has been devoted less research, interest, time and effort compared with other close conditions. Active synergistic involvement of patients, clinicians scientists in the definition unmet needs areas future research is crucial. <h3>Objectives</h3> To set up a perennial European Federation patient associations to address lack visibility needs, foster training articulate voices throughout Europe. <h3>Methods</h3> Sjögren...
<h3>Background:</h3> European Reference Networks (ERNs) are virtual networks involving centres of expertise across EU Member States with the aim tackling rare and complex diseases. The ERN ReCONNET involves currently 26 healthcare professionals (HCPs) from 8 countries cover connective tissue musculoskeletal diseases (rCTDs). Patient participation involvement, also through EURORDIS, is a key characteristic ERNs. <h3>Objectives:</h3> To demonstrate that patients' involvement collaboration...
<h3>Background:</h3> The ERN ReCONNET (European Reference Network on Rare and Complex Connective Tissue Musculoskeletal Diseases) is the aimed at improving management of Diseases across European Union (EU). involves 26 health care providers (HCPs), from eight different EU countries: Belgium, France, Germany, Italy, Netherlands, Portugal, Romania, Slovenia 7 european Patient Advocacy Group (ePAGs). An intense collaboration has been established between HCPs ePAGs. Education (PE) was defined in...