16 results on '"Farah, Tamirou"'
Search Results
2. O40 Impact of glucocorticoid dose on complete response, serious infections, and mortality during the initial therapy of lupus nephritis: a systematic review and meta-analysis of the standard of care arms of randomized controlled trials
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Farah Tamirou, Frederic Houssiau, Ali Duarte-García, Maria Dall’Era, Brad H Rovin, Larry J Prokop, Gabriel Figueroa-Parra, Cynthia S Crowson, Michael S Putman, Fernando C Fervenza, Alain Sanchez-Rodriguez, María C Cuéllar-Gutiérrez, Mariana González-Treviño, Jaime Flores-Gouyonnet, José A Meade-Aguilar, and M Hassan Murad
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Immunologic diseases. Allergy ,RC581-607 - Published
- 2024
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3. Long-term outcomes of COVID-19 vaccination in patients with rare and complex connective tissue diseases: The ERN-ReCONNET VACCINATE study
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Chiara Tani, Chiara Cardelli, Roberto Depascale, Anna Gamba, Luca Iaccarino, Andrea Doria, Matilde Bandeira, Sara Paiva Dinis, Vasco C. Romão, Emanuele Gotelli, Sabrina Paolino, Maurizio Cutolo, Niccolò Di Giosaffatte, Alessandro Ferraris, Paola Grammatico, Lorenzo Cavagna, Veronica Codullo, Carlomaurizio Montecucco, Valentina Longo, Lorenzo Beretta, Ilaria Cavazzana, Micaela Fredi, Silvia Peretti, Serena Guiducci, Marco Matucci-Cerinic, Stefano Bombardieri, Gerd R. Burmester, João E. Fonseca, Charissa Frank, Ilaria Galetti, Eric Hachulla, Ulf Müller-Ladner, Matthias Schneider, Vanessa Smith, Farah Tamirou, Jacob M. Van Laar, Ana Vieira, Rossella D'Urzo, Sara Cannizzo, Andrea Gaglioti, Diana Marinello, Rosaria Talarico, and Marta Mosca
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ystemic autoimmune disease ,SARS-CoV-2 ,COVID-19 ,Vaccination ,Flare ,Breakthrough infection ,Immunologic diseases. Allergy ,RC581-607 - Abstract
Background: Vaccination is one of the most important measures to contain the COVID-19 pandemic, especially for frail patients. VACCINATE is a multicentre prospective observational study promoted by the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases (ERN ReCONNET) aimed at assessing the long-term outcomes of COVID-19 vaccination in patients with rare and complex connective tissue diseases (rcCTDs) in terms of efficacy and safety. Methods: Adult rcCTDs patients were eligible for recruitment. Demographic, clinical and vaccination data were collected at enrolment. Follow-up visits were scheduled 4, 12, 24, 36 and 48 weeks after completion of the first vaccination cycle; data on adverse events, disease exacerbations and the occurrence of new SARS-CoV-2 infections were collected at these time-points. Findings: 365 rcCTDs patients (87 % female, mean age 51.8 ± 14.6 years) were recruited. Overall, 200 patients (54.8 %) experienced at least one adverse event, generally mild and in most cases occurring early after the vaccination. During follow-up, 55 disease exacerbations were recorded in 39 patients (10.7 %), distributed over the entire observation period, although most frequently within 4 weeks after completion of the vaccination cycle. The incidence of new SARS-CoV-2 infections was 8.9 per 1000 person-months, with no cases within 12 weeks from vaccine administration and an increasing trend of infections moving away from the primary vaccination cycle. Only one case of severe COVID-19 was reported during the study period. Interpretation: COVID-19 vaccination seems effective and safe in rcCTDs patients. The rate of new infections was rather low and serious infections were uncommon in our cohort. No increased risk of disease flares was observed compared to previous disease history; however, such exacerbations may be potentially severe, emphasising the need for close monitoring of our patients.
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- 2023
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4. Real-life prevalence of progressive fibrosing interstitial lung diseases
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Maureen Gagliardi, Damienne Vande Berg, Charles-Edouard Heylen, Sandra Koenig, Delphine Hoton, Farah Tamirou, Thierry Pieters, Benoit Ghaye, and Antoine Froidure
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Medicine ,Science - Abstract
Abstract The concept of progressive fibrosing interstitial lung disease (PF-ILD) has recently emerged. However, real-life proportion of PF-ILDs outside IPF is still hard to evaluate. Therefore, we sought to estimate the proportion of PF-ILD in our ILD cohort. We also determined the proportion of ILD subtypes within PF-ILD and investigated factors associated with PF-ILDs. Finally, we quantified interobserver agreement between radiologists for the assessment of fibrosis. We reviewed the files of ILD patients discussed in multidisciplinary discussion between January 1st 2017 and December 31st 2019. Clinical data, pulmonary function tests (PFTs) and high-resolution computed tomography (HRCTs) were centrally reviewed. Fibrosis was defined as the presence of traction bronchiectasis, reticulations with/out honeycombing. Progression was defined as a relative forced vital capacity (FVC) decline of ≥ 10% in ≤ 24 months or 5%
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- 2021
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5. 605 The Systemic Lupus Erythematosus International Collaborating Clinics (SLICC), American College of Rheumatology (ACR), and Lupus Foundation of America (LFA) Damage Index Revision – Item Generation Phase
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Farah Tamirou, Nathalie Costedoat-Chalumeau, Ian N Bruce, Guillermo Ruiz-Irastorza, Hermine I Brunner, Ellen M Ginzler, John G Hanly, Murat Inanc, Évelyne Vinet, Sindhu R Johnson, Ann E Clarke, Clóvis A Silva, Anselm Mak, Megan RW Barber, Jiacai Cho, Burak Kundakci, Abida Hasan, Naureen Kabani, Kaitlin Lima, Livia Lindoso, Rosalind Ramsey- Goldman, and Vitor C Trindade
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Immunologic diseases. Allergy ,RC581-607 - Published
- 2022
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6. Worse long-term renal outcome of lupus nephritis patients of African descent living in Europe
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Farah Tamirou, Frederic Houssiau, Nathalie Costedoat-Chalumeau, Antoine Enfrein, Adexandre Karras, Veronique Le Guern, and Valérie Pirson
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Medicine - Abstract
Introduction Prognosis of lupus nephritis (LN) among patients of African descent living in Europe has been understudied.Methods In a retrospective study performed in two European university hospitals, we compared the prognosis of LN in patients of African descent or Caucasians. Remission was defined as a urine protein to creatinine (uP/C) ratio1 g/g, leading to a repeat kidney biopsy and/or immunosuppressive treatment change. Chronic kidney disease (CKD) was defined as estimated glomerular filtration rate≤60 mL/min/1.73 m2. Adherence was retrospectively assessed through medical files and/or hydroxychloroquine level measurements.Results 52 patients of African descent and 85 Caucasian patients were included in this analysis. Class III and isolated class V LN were more common among patients of African descent. Time to first renal remission did not differ between ethnic subgroups. By contrast, patients of African descent suffered from earlier renal flares, CKD was more common and time to CKD was shorter after a flare. In a multivariate analysis, African ancestry was an independent risk factor for progression to CKD. We observed no significant difference in non-adherence to treatment between the two groups.Conclusion LN patients of African descent have worse renal outcomes, mainly explained by a higher rate of renal flare.
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- 2022
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7. High p16INK4a, a marker of cellular senescence, is associated with renal injury, impairment and outcome in lupus nephritis
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Farah Tamirou, Frederic Houssiau, Selda Aydin, Bernard Lauwerys, Gaëlle Tilman, Christine Galant, Caroline Bouzin, Pierre G Coulie, and Nisha Limaye
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Medicine - Published
- 2021
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8. Prediction of prognosis and renal outcome in lupus nephritis
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Farah Tamirou, Ioannis Parodis, and Frédéric A Houssiau
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Immunologic diseases. Allergy ,RC581-607 - Abstract
Lupus nephritis (LN) is a severe manifestation of SLE, characterised by subendothelial and/or subepithelial immune complex depositions in the afflicted kidney, resulting in extensive injury and nephron loss during the acute phase and eventually chronic irreversible damage and renal function impairment if not treated effectively. The therapeutic management of LN has improved during the last decades, but the imperative need for consensual outcome measures remains. In order to design trials with success potentiality, it is important to define clinically important short-term and long-term targets of therapeutic and non-therapeutic intervention. While it is known that early response to treatment is coupled with favourable renal outcomes, early predictors of renal function impairment are lacking. The information gleaned from kidney biopsies may provide important insights in this direction. Alas, baseline clinical and histopathological information has not been shown to be informative. By contrast, accumulating evidence of pronounced discrepancies between clinical and histopathological outcomes after the initial phase of immunosuppression has prompted investigations of the potential usefulness of per-protocol repeat kidney biopsies as an integral part of treatment evaluation, including patients showing adequate clinical response. This approach appears to have merit. Hopefully, clinical, molecular or genetic markers that reliably reflect kidney histopathology and portend the long-term prognosis will be identified. Novel non-invasive imaging methods and employment of the evolving artificial intelligence in pattern recognition may also be helpful towards these goals. The molecular and cellular characterisation of SLE and LN will hopefully result in novel therapeutic modalities, maybe new taxonomy perspectives, and ultimately personalised management.
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- 2020
- Full Text
- View/download PDF
9. Management of Lupus Nephritis
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Farah Tamirou and Frédéric A. Houssiau
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lupus nephritis ,treat-to-target approach ,repeat kidney biopsy ,combination therapy ,Medicine - Abstract
Lupus nephritis (LN) is a frequent and severe manifestation of systemic lupus erythematosus. The main goal of the management of LN is to avoid chronic kidney disease (CKD). Current treatment strategies remain unsatisfactory in terms of complete renal response, prevention of relapses, CKD, and progression to end-stage kidney disease. To improve the prognosis of LN, recent data suggest that we should (i) modify our treat-to-target approach by including, in addition to a clinical target, a pathological target and (ii) switch from conventional sequential therapy to combination therapy. Here, we also review the results of recent controlled randomized trials.
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- 2021
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10. The added value of a European Reference Network on rare and complex connective tissue and musculoskeletal diseases: insights after the first 5 years of the ERN ReCONNET
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Rosaria Talarico, Silvia Aguilera, Tobias Alexander, Zahir Amoura, Janette Andersen, Laurent Arnaud, Tadej Avcin, Sara Marsal Barril, Lorenzo Beretta, Stefano Bombardieri, Alessandra Bortoluzzi, Coralie Bouillot, Inita Bulina, Gerd R. Burmester, Sara Cannizzo, Lorenzo Cavagna, Benjamin Chaigne, Alain Cornet, Paolo Corti, Nathalie Costedoat-Chalumeau, Zane Dāvidsone, Andrea Doria, Carol Fenech, Alessandro Ferraris, Rebecca Fischer-Betz, João Eurico Fonseca, Charissa Frank, Andrea Gaglioti, Ilaria Galetti, Vera Guimarães, Eric Hachulla, Monica Holmner, Frederic Houssiau, Luca Iaccarino, Søren Jacobsen, Maarten Limper, Fransiska Malfait, Xavier Mariette, Diana Marinello, Thierry Martin, Lisa Matthews, Marco Matucci-Cerinic, Alain Meyer, Jasminka Milas-Ahić, Pia Moinzadeh, Carlomaurizio Montecucco, Luc Mouthon, Ulf Müller-Ladner, György Nagy, Eunice Patarata, Margarita Pileckyte, Chris Pruunsild, Simona Rednic, Vasco C. Romão, Matthias Schneider, Carlo Alberto Scirè, Vanessa Smith, Alberto Sulli, Farah Tamirou, Chiara Tani, Domenica Taruscio, Anna V. Taulaigo, Angela Tincani, Simone Ticciati, Giuseppe Turchetti, P. Martin van Hagen, Jacob M. van Laar, Ana Viera, Jeska K. de Vries-Bouwstra, Johannes Zschocke, Maurizio Cutolo, Marta Mosca, Talarico, R, Aguilera, S, Alexander, T, Amoura, Z, Andersen, J, Arnaud, L, Avcin, T, Marsal Barril, S, Beretta, L, Bombardieri, S, Bortoluzzi, A, Bouillot, C, Bulina, I, Burmester, G, Cannizzo, S, Cavagna, L, Chaigne, B, Cornet, A, Corti, P, Costedoat-Chalumeau, N, Davidsone, Z, Doria, A, Fenech, C, Ferraris, A, Fischer-Betz, R, Fonseca, J, Frank, C, Gaglioti, A, Galetti, I, Guimaraes, V, Hachulla, E, Holmner, M, Houssiau, F, Iaccarino, L, Jacobsen, S, Limper, M, Malfait, F, Mariette, X, Marinello, D, Martin, T, Matthews, L, Matucci-Cerinic, M, Meyer, A, Milas-Ahic, J, Moinzadeh, P, Montecucco, C, Mouthon, L, Muller-Ladner, U, Nagy, G, Patarata, E, Pileckyte, M, Pruunsild, C, Rednic, S, Romao, V, Schneider, M, Scire, C, Smith, V, Sulli, A, Tamirou, F, Tani, C, Taruscio, D, Taulaigo, A, Tincani, A, Ticciati, S, Turchetti, G, van Hagen, P, van Laar, J, Vieira, A, de Vries-Bouwstra, J, Zschocke, J, Cutolo, M, Mosca, M, UCL - SSS/IREC/RUMA - Pôle de Pathologies rhumatismales, and UCL - (SLuc) Service de rhumatologie
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rare and complex diseases ,Health Personnel ,rare and complex disease ,Immunology ,patient care ,European Reference Network ,rheumatic and musculoskeletal diseases ,rheumatic and musculoskeletal disease ,Europe ,European Reference Networks ,Rare Diseases ,Rheumatology ,Connective Tissue ,connective tissue disease ,Immunology and Allergy ,Humans ,Musculoskeletal Diseases ,connective tissue diseases ,European Commission - Abstract
In order to address the main challenges related to the rare diseases (RDs) the European Commission launched the European Reference Networks (ERNs), virtual networks involving healthcare providers (HCPs) across Europe. The mission of the ERNs is to tackle low prevalence and RDs that require highly specialised treatment and a concentration of knowledge and resources. In fact, ERNs offer the potential to give patients and healthcare professionals across the EU access to the best expertise and timely exchange of lifesaving knowledge, trying to make the knowledge travelling more than patients. For this reason, ERNs were established as concrete European infrastructures, and this is particularly crucial in the framework of rare and complex diseases in which no country alone has the whole knowledge and capacity to treat all types of patients. It has been five years since their kick-off launch in Vilnius in 2017. The 24 ERNs have been intensively working on different transversal areas, including patient management, education, clinical practice guidelines, patients' care pathways and many other fundamental topics. The present work is therefore aimed not only at reporting a summary of the main activities and milestones reached so far, but also at celebrating the first 5 years of the ERN on Rare and Complex Connective Tissue and Musculo-skeletal Diseases (ReCONNET), in which the members of the network built together one of the 24 infrastructures that are hopefully going to change the scenario of rare diseases across the EU.
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- 2022
11. High p16INK4a, a marker of cellular senescence, is associated with renal injury, impairment and outcome in lupus nephritis
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Frédéric Houssiau, Caroline Bouzin, Bernard Lauwerys, Pierre Coulie, Gaëlle Tilman, Christine Galant, Farah Tamirou, Nisha Limaye, Selda Aydin, UCL - SSS/DDUV - Institut de Duve, UCL - SSS/DDUV/GECE - Génétique cellulaire, UCL - SSS/DDUV/GEPI - Epigénétique, UCL - SSS/IREC/MORF - Pôle de Morphologie, UCL - SSS/IREC/NEFR - Pôle de Néphrologie, UCL - SSS/IREC/RUMA - Pôle de Pathologies rhumatismales, UCL - (SLuc) Service d'anatomie pathologique, and UCL - (SLuc) Service de rhumatologie
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Pathology ,medicine.medical_specialty ,Kidney ,Systemic disease ,Lupus erythematosus ,business.industry ,Autoimmune diseases ,Systemic ,Immunology ,Lupus nephritis ,Renal function ,medicine.disease ,medicine.anatomical_structure ,Rheumatology ,Fibrosis ,medicine ,Renal fibrosis ,Immunology and Allergy ,Medicine ,business ,CD8 - Abstract
ObjectivesBecause a significant fraction of patients with lupus nephritis (LN) develops renal impairment, there is a need to better understand the mechanisms underlying disease progression. Here, we assessed for cellular senescence in the LN kidney, and its association with disease severity and outcome.MethodsWe enumerated the number of cells positive for p16INK4a protein, a marker of cellular senescence, by immunohistochemistry followed by digital quantification, on renal biopsies from 40 patients with active LN. We tested for an association of p16INK4a with renal fibrosis, CD8+ T cell infiltration, systemic disease and renal function at baseline and at 5 years.ResultsThe presence of p16INK4a-positive cells was significantly associated with lower estimated glomerular filtration rate at baseline and 5 years post-treatment, independently of patient demographics and systemic disease parameters. It was also associated with higher baseline renal fibrosis and CD8+ T cell infiltration. Interestingly, we observed marked spatial co-distribution of glomerular p16INK4a-positive cells with CD8+ T cells.ConclusionWe demonstrate, for the first time, that LN biopsies characterised by renal impairment display increased p16INK4a-positive cells, associated with higher fibrosis and CD8+ T cell infiltration. Cellular senescence may represent a kidney-intrinsic disease mechanism and potentially, a novel therapeutic target in LN.
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- 2021
12. Absence of renal remission portends poor long-term kidney outcome in lupus nephritis
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Antoine Enfrein, Valérie Pirson, Frédéric Houssiau, Farah Tamirou, UCL - SSS/IREC/RUMA - Pôle de Pathologies rhumatismales, and UCL - (SLuc) Service de rhumatologie
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medicine.medical_specialty ,Immunology ,Lupus nephritis ,Renal function ,Brief Communication ,urologic and male genital diseases ,Kidney ,Gastroenterology ,chemistry.chemical_compound ,Internal medicine ,Biopsy ,Medicine ,Humans ,outcome assessment ,Retrospective Studies ,lupus nephritis ,Creatinine ,Lupus erythematosus ,medicine.diagnostic_test ,business.industry ,Systemic ,Health care ,General Medicine ,systemic ,RC581-607 ,medicine.disease ,health care ,Outcome assessment ,medicine.anatomical_structure ,chemistry ,Cohort ,Immunologic diseases. Allergy ,business ,lupus erythematosus ,Kidney disease ,Glomerular Filtration Rate - Abstract
BackgroundThe very long-term consequences of absence of remission in lupus nephritis (LN) remain understudied.MethodsIn this retrospective analysis, we studied a selected cohort of 128 patients with biopsy-proven class III, IV or V incident LN followed for a median period of 134 months (minimum 25). Remission was defined as a urine protein to creatinine (uP:C) ratio 1 g/g, leading to a repeat kidney biopsy and treatment change. Poor long-term renal outcome was defined as the presence of chronic kidney disease (CKD).ResultsTwenty per cent of patients never achieved renal remission. Their baseline characteristics did not differ from those who did. Absence of renal remission was associated with a threefold higher risk of CKD (48% vs 16%) and a 10-fold higher risk of end-stage renal disease (20% vs 2%). Patients achieving early remission had significantly higher estimated glomerular filtration rate (eGFR) at last follow-up compared with late remitters. Accordingly, patients with CKD at last follow-up had statistically longer time to remission. Among patients who achieved remission, 32% relapsed, with a negative impact on renal outcome, that is, lower eGFR values and higher proportion of CKD (33% vs 8%).ConclusionEarly remission should be achieved to better preserve long-term renal function.
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- 2021
13. Prediction of prognosis and renal outcome in lupus nephritis
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Ioannis Parodis, Farah Tamirou, and Frédéric Houssiau
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0301 basic medicine ,Male ,lcsh:Immunologic diseases. Allergy ,medicine.medical_specialty ,medicine.medical_treatment ,Biopsy ,Immunology ,Lupus nephritis ,Renal function ,Review ,Nephron ,Kidney ,outcomes research ,03 medical and health sciences ,0302 clinical medicine ,systemic lupus erythematosus ,Artificial Intelligence ,Outcome Assessment, Health Care ,medicine ,Humans ,Lupus Erythematosus, Systemic ,Renal Insufficiency ,Intensive care medicine ,030203 arthritis & rheumatology ,Immunosuppression Therapy ,business.industry ,Immunosuppression ,General Medicine ,medicine.disease ,Prognosis ,Lupus Nephritis ,Immune complex ,Patient Outcome Assessment ,030104 developmental biology ,medicine.anatomical_structure ,Histopathology ,Female ,Outcomes research ,business ,lcsh:RC581-607 ,Biomarkers - Abstract
Lupus nephritis (LN) is a severe manifestation of SLE, characterised by subendothelial and/or subepithelial immune complex depositions in the afflicted kidney, resulting in extensive injury and nephron loss during the acute phase and eventually chronic irreversible damage and renal function impairment if not treated effectively. The therapeutic management of LN has improved during the last decades, but the imperative need for consensual outcome measures remains. In order to design trials with success potentiality, it is important to define clinically important short-term and long-term targets of therapeutic and non-therapeutic intervention. While it is known that early response to treatment is coupled with favourable renal outcomes, early predictors of renal function impairment are lacking. The information gleaned from kidney biopsies may provide important insights in this direction. Alas, baseline clinical and histopathological information has not been shown to be informative. By contrast, accumulating evidence of pronounced discrepancies between clinical and histopathological outcomes after the initial phase of immunosuppression has prompted investigations of the potential usefulness of per-protocol repeat kidney biopsies as an integral part of treatment evaluation, including patients showing adequate clinical response. This approach appears to have merit. Hopefully, clinical, molecular or genetic markers that reliably reflect kidney histopathology and portend the long-term prognosis will be identified. Novel non-invasive imaging methods and employment of the evolving artificial intelligence in pattern recognition may also be helpful towards these goals. The molecular and cellular characterisation of SLE and LN will hopefully result in novel therapeutic modalities, maybe new taxonomy perspectives, and ultimately personalised management.
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- 2020
14. Idiopathic inflammatory myopathies: state of the art on clinical practice guidelines
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Carlo Alberto Scirè, Thomas Krieg, Nataša Toplak, Pia Moinzadeh, Maurizio Cutolo, Carlomaurizio Montecucco, Ilaria Galetti, David Launay, Marta Mosca, Stefano Bombardieri, Lorenzo Beretta, Matthias F. Schneider, Maddalena Larosa, Thierry Martin, Patrick Cherrin, João Eurico Fonseca, Tobias Alexander, Federica Furini, Maria Francisca Moraes-Fontes, Marco Matucci-Cerinic, Ilaria Cavazzana, Lorenzo Cavagna, Rosaria Talarico, Farah Tamirou, Andrea Doria, Sabrina Paolino, Angela Tincani, Ana Rita Vieira, Ulf Mueller-Ladner, Eric Hachulla, Simone Barsotti, Gerd R Burmester, Zahir Amoura, Laura Damian, Tadej Avcin, Alain Meyer, Simona Rednic, Luc Mouthon, Yves Piette, Raquel Campanilho-Marques, Vanessa Smith, Jelena Blagojevic, Frédéric Houssiau, Rossella Neri, and Repositório da Universidade de Lisboa
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medicine.medical_specialty ,Evidence-based practice ,Immunology ,Azathioprine ,Antisynthetase syndrome ,Disease ,NO ,polymyositis ,03 medical and health sciences ,0302 clinical medicine ,ADULT ,Rheumatology ,intravenous immunoglobulin ,Medicine and Health Sciences ,MYOSITIS ,MANAGEMENT ,medicine ,INTRAVENOUS IMMUNOGLOBULIN ,Immunology and Allergy ,media_common.cataloged_instance ,European union ,Intensive care medicine ,Juvenile dermatomyositis ,media_common ,030203 arthritis & rheumatology ,juvenile dermatomyositis ,business.industry ,adult ,MORTALITY ,Interstitial lung disease ,JUVENILE DERMATOMYOSITIS ,hikers feet ,medicine.disease ,mortality ,Comorbidity ,intravenous immunoglobulin, juvenile dermatomyositis, hikers feet, consensus, myositis, polymyositis, management, adult, mortality, arthritis ,arthritis ,POLYMYOSITIS ,consensus ,HIKERS FEET ,ARTHRITIS ,CONSENSUS ,business ,myositis ,management ,030217 neurology & neurosurgery ,medicine.drug - Abstract
© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ, This article has been corrected since it first published. The authors would like to notify that title of the article has been changed to:Idiopathic inflammatory myopathies: state of the art on clinical practice guidelines. RMD Open 2019;5:e000784corr1. doi:10.1136/rmdopen-2018-000784cor, Idiopathic inflammatory myopathies (IIMs) encompass a heterogeneous group of rare autoimmune diseases characterised by muscle weakness and inflammation, but in antisynthetase syndrome arthritis and interstitial lung disease are more frequent and often inaugurate the disease. Clinical practice guidelines (CPGs) have been proposed for IIMs, but they are sparse and heterogeneous. This work aimed at identifying: i) current available CPGs for IIMs, ii) patients’ and clinicians’ unmet needs not covered by CPGs. It has been performed in the framework of the European Reference Network on rare and complex connective tissue and musculoskeletal diseases (ReCONNET), a network of centre of expertise and patients funded by the European Union’s Health Programme. Fourteen original CPGs were identified, notably recommending that: i) extra-muscular involvements should be assessed; ii) corticosteroids and methotrexate or azathioprine are first-line therapies of IIMs. iii) IVIG is a treatment of resistantDM that may be also used in other resistant-IIMs; iv) physical therapy and sun protection (in DM patients) are part of the treatment; v) tumour screening for patients with DM include imaging of chest, abdomen, pelvis and breast (in woman) along with colonoscopy (in patients over 50 years); vi) disease activity and damages should be monitor using standardised and validated tools. Yet, only half of these CPGs were evidence-based. Crucial unmet needs were identified both by patients and clinicians. In particular, there was a lack of large multidisciplinary working group and of patients’ preferences. The following fields were not or inappropriately targeted: diagnosis; management of extra-muscular involvements other than skin; co-morbidities and severe manifestations., This publication was funded by the European Union’s Health Programme (2014-2020), Framework Partnership Agreement number: 739531 – ERN ReCONNET. The content of this publication represents the views of the authors only and it is their sole responsibility; it cannot be considered to reflect the views of the European Commission and/or the Consumers, Health, Agriculture and Food Executive Agency (CHAFEA) or any other body of the European Union. The European Commission and the Agency do not accept any responsibility for use that may be made of the information it contains.
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- 2019
15. Systemic lupus erythematosus: state of the art on clinical practice guidelines
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Ricard Cervera, Sabrina Paolino, Angela Tincani, Ulf Mueller-Ladner, Hervé Devilliers, Gerd R Burmester, Zahir Amoura, Fabrizio Conti, Thierry Martin, Marcello Govoni, Laurent Arnaud, Carlo Alberto Scirè, Tadej Avcin, Matthias Schneider, Marta Mosca, Micaela Fredi, Ana Lladó, Carla Macieira, Maria G Tektonidou, Ilaria Galetti, Alain Cornet, Cristina Pamfil, Maurizio Cutolo, Vanessa Smith, Farah Tamirou, Stefano Bombardieri, Laura Massaro, Eric Hachulla, Frédéric Houssiau, Andrea Doria, Micol Frassi, Fonseca João Eurico, Ronald F van Vollenhoven, Rosaria Talarico, Tobias Alexander, Maria Francisca Moraes-Fontes, Sander W. Tas, Chiara Tani, Alessandra Bortoluzzi, N. Costedoat-Chalumeau, Université Catholique de Louvain = Catholic University of Louvain (UCL), Les Hôpitaux Universitaires de Strasbourg (HUS), Azienda Ospedaliero-Universitaria Pisana [Pisa, Italy], Università degli Studi di Ferrara (UniFE), Charité - UniversitätsMedizin = Charité - University Hospital [Berlin], CHU Pitié-Salpêtrière [AP-HP], Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP), University Medical Centre Ljubljana [Ljubljana, Slovenia] (UMCL), Clinic Barcelona Hospital Universitari, Università degli Studi di Roma 'La Sapienza' = Sapienza University [Rome], Centre Hospitalier Universitaire de Dijon - Hôpital François Mitterrand (CHU Dijon), Université de Bourgogne (UB), Azienda Ospedale Università di Padova = Hospital-University of Padua (AOUP), Spedali Civili Hospital [Brescia], Centro Hospitalar de Lisboa Central [Portugal], Centro Hospitalar Universitário Lisboa Norte [Lisbon, Portugal] (CHULN), University of Genoa (UNIGE), University of Amsterdam [Amsterdam] (UvA), Amsterdam Rheumatology & Immunology Center - ARC [Amsterdam, the Netherlands] (Amsterdam UMC), National and Kapodistrian University of Athens (NKUA), University of Pisa - Università di Pisa, Centre National de Référence des Maladies Auto-Immunes Systémiques Rares du Nord et Nord-Ouest de France (CeRAINO), Lille Inflammation Research International Center - U 995 (LIRIC), Institut Pasteur de Lille, Réseau International des Instituts Pasteur (RIIP)-Réseau International des Instituts Pasteur (RIIP)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université de Lille-Centre Hospitalier Régional Universitaire [Lille] (CHRU Lille), CHU Lille, Kerckhoff clinic, Partenaires INRAE, Universitätsklinikum Düsseldorf, Universiteit Gent = Ghent University [Belgium] (UGENT), Hôpital Cochin [AP-HP], Centre de Recherche Épidémiologie et Statistique Sorbonne Paris Cité (CRESS (U1153 / UMR_A_1125 / UMR_S_1153)), Conservatoire National des Arts et Métiers [CNAM] (CNAM), HESAM Université (HESAM)-HESAM Université (HESAM)-Université Sorbonne Paris Cité (USPC)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université Paris Cité (UPC)-Institut National de Recherche pour l’Agriculture, l’Alimentation et l’Environnement (INRAE), Università degli Studi di Ferrara = University of Ferrara (UniFE), Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP)-Sorbonne Université (SU), Università degli Studi di Roma 'La Sapienza' = Sapienza University [Rome] (UNIROMA), Università degli studi di Genova = University of Genoa (UniGe), Universiteit Gent = Ghent University (UGENT), Institut National de la Recherche Agronomique (INRA)-Université Paris Diderot - Paris 7 (UPD7)-Université Paris Descartes - Paris 5 (UPD5)-Université Sorbonne Paris Cité (USPC)-Institut National de la Santé et de la Recherche Médicale (INSERM), UCL - SSS/IREC/RUMA - Pôle de Pathologies rhumatismales, UCL - (SLuc) Service de rhumatologie, Tamirou, F, Arnaud, L, Talarico, R, Scire, C, Alexander, T, Amoura, Z, Avcin, T, Bortoluzzi, A, Cervera, R, Conti, F, Cornet, A, Devilliers, H, Doria, A, Frassi, M, Fredi, M, Govoni, M, Houssiau, F, Llado, A, Macieira, C, Martin, T, Massaro, L, Moraes-Fontes, M, Pamfil, C, Paolino, S, Tani, C, Tas, S, Tektonidou, M, Tincani, A, Van Vollenhoven, R, Bombardieri, S, Burmester, G, Eurico, F, Galetti, I, Hachulla, E, Mueller-Ladner, U, Schneider, M, Smith, V, Cutolo, M, Mosca, M, and Costedoat-Chalumeau, N
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medicine.medical_specialty ,HCC DAUTOIM ,Immunology ,MEDLINE ,Lupus nephritis ,Lupus ,Guidelines ,AMERICAN-COLLEGE ,DIAGNOSIS ,Systemic Lupus Erythematosus ,Unmet needs ,NO ,03 medical and health sciences ,0302 clinical medicine ,Quality of life (healthcare) ,lupu ,Rheumatology ,immune system diseases ,EUROPEAN LEAGUE ,Immunology and Allergy ,Internal medicine ,medicine ,Medicine and Health Sciences ,MANAGEMENT ,030212 general & internal medicine ,EVIDENCE-BASED RECOMMENDATIONS ,Disease management (health) ,Intensive care medicine ,RHEUMATIC-DISEASES ,030203 arthritis & rheumatology ,RISK ,business.industry ,ASSOCIATION ,medicine.disease ,State of the Art ,3. Good health ,Clinical Practice ,EULAR RECOMMENDATIONS ,PREGNANCY ,[SDV.IMM]Life Sciences [q-bio]/Immunology ,business - Abstract
Systemic lupus erythematosus (SLE) is the paradigm of systemic autoimmune diseases characterised by a wide spectrum of clinical manifestations with an unpredictable relapsing-remitting course. The aim of the present work was to identify current available clinical practice guidelines (CPGs) for SLE, to provide their review and to identify physicians' and patients' unmet needs. Twenty-three original guidelines published between 2004 and 2017 were identified. Many aspects of disease management are covered, including global disease management, lupus nephritis and neuropsychiatric involvement, management of pregnancies, vaccinations and comorbidities monitoring. Unmet needs relate with disease management of some clinical manifestations and adherence to treatment. Many patient's unmet needs have been identified starting with faster diagnosis, need for more therapeutic options, guidelines on lifestyle issues, attention to quality of life and adequate education. info:eu-repo/semantics/publishedVersion
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- 2018
16. Idiopathic inflammatory myopathies: state of the art on clinical practice guidelines [corrected]
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Alain, Meyer, Carlo Alberto, Scirè, Rosaria, Talarico, Tobias, Alexander, Zahir, Amoura, Tadej, Avcin, Simone, Barsotti, Lorenzo, Beretta, Jelena, Blagojevic, Gerd, Burmester, Ilaria, Cavazzana, Patrick, Cherrin, Laura, Damian, Andrea, Doria, João Eurico, Fonseca, Federica, Furini, Ilaria, Galetti, Frederic, Houssiau, Thomas, Krieg, Larosa, Maddalena, David, Launay, Raquel, Campanilho-Marques, Thierry, Martin, Marco, Matucci-Cerinic, Pia, Moinzadeh, Carlomaurizio, Montecucco, Maria Francisca, Moraes-Fontes, Luc, Mouthon, Rossella, Neri, Sabrina, Paolino, Yves, Piette, Simona, Rednic, Farah, Tamirou, Angela, Tincani, Natasa, Toplak, Stefano, Bombardieri, Eric, Hachulla, Ulf, Mueller-Ladner, Matthias, Schneider, Vanessa, Smith, Ana, Vieira, Maurizio, Cutolo, Marta, Mosca, Lorenzo, Cavagna, UCL - (SLuc) Service de rhumatologie, and UCL - SSS/IREC/RUMA - Pôle de Pathologies rhumatismales
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HCC DAUTOIM ,Idiopathic inflammatory myopathies ,Clinical practice guidelines ,State of the art - Abstract
Idiopathic inflammatory myopathies (IIMs) encompass a heterogeneous group of rare autoimmune diseases characterised by muscle weakness and inflammation, but in antisynthetase syndrome arthritis and interstitial lung disease are more frequent and often inaugurate the disease. Clinical practice guidelines (CPGs) have been proposed for IIMs, but they are sparse and heterogeneous. This work aimed at identifying: i) current available CPGs for IIMs, ii) patients ' and clinicians' unmet needs not covered by CPGs. It has been performed in the framework of the European Reference Network on rare and complex connective tissue and musculoskeletal diseases (ReCONNET), a network of centre of expertise and patients funded by the European Union's Health Programme. Fourteen original CPGs were identified, notably recommending that: i) extra-muscular involvements should be assessed; ii) corticosteroids and methotrexate or azathioprine are first-line therapies of IIMs. ii) IVIG is a treatment of resistant-DM that may be also used in other resistant-IIMs; iii) physical therapy and sun protection (in DM patients) are part of the treatment; v) tumour screening for patients with DM include imaging of chest, abdomen, pelvis and breast (in woman) along with colonoscopy (in patients over 50 years); vi) disease activity and damages should be monitor using standardised and validated tools. Yet, only half of these CPGs were evidence-based. Crucial unmet needs were identified both by patients and clinicians. In particular, there was a lack of large multidisciplinary working group and of patients ' preferences. The following fields were not or inappropriately targeted: diagnosis; management of extra-muscular involvements other than skin; co-morbidities and severe manifestations. info:eu-repo/semantics/publishedVersion
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- 2018
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