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1. ERN ReCONNET points to consider for treating patients living with autoimmune rheumatic diseases with antiviral therapies and anti-SARS-CoV-2 antibody products

Author

Talarico, R, Ramirez, G, Barreira, S, Cardamone, C, Triggianese, P, Aguilera, S, Andersen, J, Avcin, T, Benistan, K, Bertsias, G, Bortoluzzi, A, Bouillot, C, Bulina, I, Burmester, G, Callens, S, Carreira, P, Cervera, R, Cutolo, M, Damian, L, Della-Torre, E, Faria, R, Fonseca, J, Galetti, I, Hachulla, E, Iaccarino, L, Jacobsen, S, Khmelinskii, N, Limper, M, Marinello, D, Meyer, A, Moroncini, G, Nagy, G, Olesinska, M, Pamfil, C, Pileckyte, M, Pistello, M, Rednic, S, Richez, C, Romao, V, Schneider, M, Sciascia, S, Scire, C, Simonini, G, Smith, V, Sulli, A, Tani, C, Tas, S, Tincani, A, Vonk, M, Tektonidou, M, Mosca, M, Talarico R., Ramirez G. A., Barreira S. C., Cardamone C., Triggianese P., Aguilera S., Andersen J., Avcin T., Benistan K., Bertsias G., Bortoluzzi A., Bouillot C., Bulina I., Burmester G. R., Callens S., Carreira P. E., Cervera R., Cutolo M., Damian L., Della-Torre E., Faria R., Fonseca J. E., Galetti I., Hachulla E., Iaccarino L., Jacobsen S., Khmelinskii N., Limper M., Marinello D., Meyer A., Moroncini G., Nagy G., Olesinska M., Pamfil C., Pileckyte M., Pistello M., Rednic S., Richez C., Romao V. C., Schneider M., Sciascia S., Scire C. A., Simonini G., Smith V., Sulli A., Tani C., Tas S. W., Tincani A., Vonk M. C., Tektonidou M., Mosca M., Talarico, R, Ramirez, G, Barreira, S, Cardamone, C, Triggianese, P, Aguilera, S, Andersen, J, Avcin, T, Benistan, K, Bertsias, G, Bortoluzzi, A, Bouillot, C, Bulina, I, Burmester, G, Callens, S, Carreira, P, Cervera, R, Cutolo, M, Damian, L, Della-Torre, E, Faria, R, Fonseca, J, Galetti, I, Hachulla, E, Iaccarino, L, Jacobsen, S, Khmelinskii, N, Limper, M, Marinello, D, Meyer, A, Moroncini, G, Nagy, G, Olesinska, M, Pamfil, C, Pileckyte, M, Pistello, M, Rednic, S, Richez, C, Romao, V, Schneider, M, Sciascia, S, Scire, C, Simonini, G, Smith, V, Sulli, A, Tani, C, Tas, S, Tincani, A, Vonk, M, Tektonidou, M, Mosca, M, Talarico R., Ramirez G. A., Barreira S. C., Cardamone C., Triggianese P., Aguilera S., Andersen J., Avcin T., Benistan K., Bertsias G., Bortoluzzi A., Bouillot C., Bulina I., Burmester G. R., Callens S., Carreira P. E., Cervera R., Cutolo M., Damian L., Della-Torre E., Faria R., Fonseca J. E., Galetti I., Hachulla E., Iaccarino L., Jacobsen S., Khmelinskii N., Limper M., Marinello D., Meyer A., Moroncini G., Nagy G., Olesinska M., Pamfil C., Pileckyte M., Pistello M., Rednic S., Richez C., Romao V. C., Schneider M., Sciascia S., Scire C. A., Simonini G., Smith V., Sulli A., Tani C., Tas S. W., Tincani A., Vonk M. C., Tektonidou M., and Mosca M.

Abstract

Recent studies have shown that people who are immunocompromised may inadvertently play a role in spurring the mutations of the virus that create new variants. This is because some immunocompromised individuals remain at risk of getting COVID-19 despite vaccination, experience more severe disease, are susceptible to being chronically infected and remain contagious for longer if they become infected and considering that immunocompromised individuals represent approximately 2% of the overall population, this aspect should be carefully considered. So far, some autoimmune rheumatic disease (ARD) patients with COVID-19 have been treated with antiviral therapies or anti-SARS-CoV-2 antibody products. However, there is no homogeneous approach to these treatment strategies. This issue was addressed within the European Reference Network (ERN) on Rare and Complex Connective Tissue and Musculoskeletal Diseases (ReCONNET) in a discussion among experts and patient's representatives in the context of the rare and complex connective tissue diseases (rCTDs) covered by the Network. ERN ReCONNET is one of the 24 ERNs launched by the European Commission in 2017 with the aim of tackling low prevalence and rare diseases that require highly specialised treatment and promoting concentration of knowledge and resources through virtual networks involving healthcare providers (HCPs) across the European Union (EU). Considering the urgent need to provide guidance not only to the rCTDs community, but also to the whole ARDs community, a multidisciplinary Task Force, including expert clinicians and European Patient Advocacy Group (ePAG) Advocates, was created in the framework of ERN ReCONNET with the aim of developing overarching principles (OP) and points-to-consider (PtC) on a homogenous approach to treat immunocompromised patients with ARDs (with a particular focus on CTDs) affected by COVID-19 using antiviral therapies and anti-SARS-CoV-2 antibody products. The present work reports the final OP

Published
2023

2. 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

Author

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, 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. R., 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. E., 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. C., Schneider M., Scire C. A., Smith V., Sulli A., Tamirou F., Tani C., Taruscio D., Taulaigo A. V., Tincani A., Ticciati S., Turchetti G., van Hagen P. M., van Laar J. M., Vieira A., de Vries-Bouwstra J. K., Zschocke J., Cutolo M., Mosca M., 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, 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. R., 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. E., 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. C., Schneider M., Scire C. A., Smith V., Sulli A., Tamirou F., Tani C., Taruscio D., Taulaigo A. V., Tincani A., Ticciati S., Turchetti G., van Hagen P. M., van Laar J. M., Vieira A., de Vries-Bouwstra J. K., Zschocke J., Cutolo M., and Mosca M.

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.

Published
2022

3. Association between age at disease onset of anti-neutrophil cytoplasmic antibody-associated vasculitis and clinical presentation and short-term outcomes

Author

Monti, S., Craven, A., Klersy, C., Montecucco, C., Caporali, R., Watts, R., Merkel, P. A., Luqmani, R., Achilleos, K., Adler, M., Alba, M. A., Albert, D. A., Alibaz-Oner, F., Allcoat, P., Amano, K., Amarasuriya, M., Amudala, N. A., Andrews, J., Archer, A. M., Arimura, Y., Atukorala, I., Azevedo, E., Bajad, S., Baldwin, C., Barra, L. J., Baslund, B., Basu, N., Baykal, M., Berger, C., Berglin, E., Besada, E., Bhardwaj, M., Bischof, A., Blockmans, D., Blood, J., Draibe, J. B., Brand, S., Brandao, M., Bruce, I. N., Butler, A., Calabrese, L. H., Ferrer, D. C., Carette, S., Carmona, D., Ceunen, H., Chakravarty, K., Chapman, P. T., Chocova, Z., Chung, S. A., Ci, W., Cid, M. C., Clark, T. M., Clarkson, M. R., De Jesus Contreras-Rodriguez, F., Conway, R., Cooke, K., Viros, X. C., Cordeiro, A., Costa, A., Culfear, K., Daikeler, T., Danda, D., Das, S. K., Dasgupta, B., De Castro, A. M., Dehghan, N., Devassy, R., Dhindsa, N., Diamantopoulos, A. P., Direskeneli, H., Dobashi, H., Juan, D., Durrani, M., Edelsten, C., Eifert, J., Elhayek, S., Elsideeg, S., Endo, T., Erden, A., Erer, B., Eriksson, P., Erturk, Z., Espigol-Frigole, G., Felicetti, M., Ferraro, A., Ferro, J. M., Fifi-Mah, A., Flores-Suarez, L. F., Flossmann, O., Flynn, D., Fonseca, J. E., Foot, J., Foote, M., Forbess, L., Fujimoto, S., Fukuoka, K., Furtado, C., Furuta, S., Gaffo, A. L., Gallagher, P., Gao, N., Gatenby, P., Gendi, N., Geraldes, R., Gerits, A., Gioffredi, A., Gomples, L., Goncalves, M. J., Gondo, P., Graham, A., Grainger, R., Gray, D. T., Grayson, P. C., Griffiths, L., Guo, Y., Gupta, R., Gylling, M., Hajj-Ali, R. A., Hammam, N., Harigai, M., Hartley, L., Haslett, J., Hassan, A., Hatemi, G., Hellmich, B., Henckaerts, L., Henes, J. C., Hepburn, J., Herd, V., Hess, C., Hill, C., Hinojosa-Azaola, A., Hirahashi, J., Hirano, F., Hocevar, A., Holle, J., Hollinger, N., Homma, S., Howard, T., Hoyles, R. K., Hruskova, Z., Hutcheon, G., Ignacak, M., Igney-Oertel, A., Ikeda, K., Ikegaya, N., Jagadeesh, S., Jaquith, J., Jayne, D. R. W., Jewell, T., Jones, C., Joshi, A., Kalyoncu, U., Kamall, S., Kamath, S., Lai, K. S., Kaname, S., Kanchinadham, S., Karadag, O., Karube, M., Kaszuba, M., Kaur, R., Kawakami, T., Kawashima, S., Khalidi, N., Khan, A., Kikuchi, M., Kilic, L., Kimura, M., King, M. J., Klapa, S., Klocke, R., Kobayashi, T., Kobayashi, S., Komagata, Y., Kronbichler, A., Kuczia, P., Kumar, M. S., Kurosawa, M., Lamprecht, P., Langford, C. A., Lanyon, P., Laversuch, C., Lee, S. J., Leoni, S., Li, J., Liang, K., Liang, P., Liao, H., Lee, L. A., Luqmani, R. A., Lyle, A., Macdonald, M., Mackie, S. L., Madden, L., Magliano, M., Makino, H., Makol, A., Malaiya, R., Malaviya, A., Manthri, R., Maritati, F., Da Silva, A. M., Mason, J. C., Matara, C., Matsui, K., Matteson, E. L., Mcbride, D., Mccullough, K., Mcgeoch, L., Mclaren, J., Mcmillian, C., Mendiratta, N., Menon, A., Merinopoulos, D., Merkel, P., Messier, S., Micheletti, R. G., Mills, K., Milman, N., Minoda, M., Minz, R. W., Mock, C., Mohammad, A. J., Moiseev, S., Moitinho, M., Molloy, E., Monach, P. A., Montgomery, M., Moosig, F., Moradizadeh, M., Morgan, M., Morgan, A. W., Morgan, A. -M., Muir, A., Mukhtyar, C., Muller, A., Muratore, F., Muso, E., Nada, R., Nakajima, H., Nakajima, T., Nakano, H., Nandagudi, A., Neumann, T., Y. F., Ng, K. H., Ng, Nogueira, E. L., Nolkha, N., Nordstrom, D., Novikov, P., Nugaliyadde, A., O'Donnell, J. L., O'Donoghue, J., O'Neill, L., O'Riordan, E., Oatley, M., Okubo, K., Oliva, E., Oshikawa, H., Ota, Y., Padoan, R., Pagnoux, C., Pan, L., Panaritis, K., Park, J. K., Patel, S., Patil, P., Pazzola, G., Peall, A., Pearce, F., Pehlevan, S., Pereira, L., Pettersson, T., Pineau, C. A., Pirila, L., Poglodek, B., Ponte, C., Prieto-Gonzalez, S., Priya, S. R., Purewal, B., Purschke, S., Putaala, J., Quickert, S., Quincey, V., Raghuvanshi, S., Rajasekhar, L., Ranganathan, D., Rathi, M., Rees, D., Rees, F., Renken, U., Restuccia, G., Rhee, R. L., Rice, B., Robins, D., Robson, J., Rodrigues, M., Romao, V. C., Rotar, C., Ruediger, C., Rutgers, A., A. C., Sa, Saavedra, M. J., Sada, K. -E., Sahbudin, I., Salvarani, C., Sandhu, N., Santos, E., Sato, Y., Schafer, V. S., Schiavon, F., Schmidt, W. A., Segelmark, M., Shahin, A., Sharma, A., Shotton, J., Silva, C., Singer, O. G., Sivasuthan, G., Smolen, S., Solanich-Moreno, X., Boixader, L. S., Song, Y. W., Springer, J., Sreih, A. G., Srivastava, R., Stamp, L. K., Stevens, R., Strbian, D., Sugino, K., Sunderkotter, C., Suppiah, R., Suzuki, K., Szekanecz, Z., Sznajd, J., Taimen, K., Tak, P. P., Takeuchi, T., Takizawa, N., Tames, L., Tan, B. E., Tanaka, M., Tang, M. W., Tatlisumak, T., Tesar, V., Thomas, A., Tian, X., Tokunaga, K., Tombetti, E., Tomsic, M., Toz, B., Tsukamoto, T., Uchida, S., Unal, A. U., Urban, M. L., Usui, J., Vaglio, A., Venkatachalam, S., Vermaak, E., Viswanath, V., Wada, T., Wagh, S., Wallace, D. J., Walters, G., Walz, B., Wan, J., Wang, T., Wang, G., Warrington, K. J., Watts, R. A., Wawrzycka-Adamczyk, K., Weeratunga, P., Weisman, M. H., Wickramasinghe, S., Williams, M., Wojcik, K., Woodruff, L., Xenitidis, T., Yamada, H., Yamagata, K., Yee, C. -S., Yoon, M., Yoshida, K., Yoshifuji, H., Ytterberg, S. R., Yumura, W., Zayed, H., Zeng, X., Zhao, M. -H., Zugaj, A., Zuk, J., İç Hastalıkları, Clinical Haematology, and Translational Immunology Groningen (TRIGR)

Subjects
Male, Outcome, Antineutrophil Cytoplasmic, 030232 urology & nephrology, 0302 clinical medicine, Risk Factors, 80 and over, Pharmacology (medical), Age of Onset, Young adult, Aged, 80 and over, education.field_of_study, age, anti-neutrophil cytoplasmic antibody-associated vasculitis, outcome, Adolescent, Adult, Aged, Anti-Neutrophil Cytoplasmic Antibody-Associated Vasculitis, Antibodies, Antineutrophil Cytoplasmic, Female, Humans, Middle Aged, Morbidity, Prognosis, Retrospective Studies, Risk Assessment, Survival Rate, United Kingdom, Young Adult, Vasculitis, Systemic vasculitis, medicine.medical_specialty, Population, anti-neutrophil cytoplasmic antibody–associated vasculitis, Antibodies, 03 medical and health sciences, Rheumatology, Internal medicine, medicine, education, Anti-neutrophil cytoplasmic antibody–associated vasculitis, Survival rate, Anti-neutrophil cytoplasmic antibody, 030203 arthritis & rheumatology, business.industry, Retrospective cohort study, medicine.disease, Age of onset, business
Abstract

Objectives ANCA-associated vasculitis (AAV) can affect all age groups. We aimed to show that differences in disease presentation and 6 month outcome between younger- and older-onset patients are still incompletely understood. Methods We included patients enrolled in the Diagnostic and Classification Criteria for Primary Systemic Vasculitis (DCVAS) study between October 2010 and January 2017 with a diagnosis of AAV. We divided the population according to age at diagnosis: Results A total of 1338 patients with AAV were included: 66% had disease onset at Conclusion Within 6 months of diagnosis of AAV, patients >65 years of age display a different pattern of organ involvement and an increased risk of significant damage and mortality compared with younger patients.

Published
2021

4. Sjögren's syndrome: State of the art on clinical practice guidelines

Author

Romao, V, Talarico, R, Scire, C, Vieira, A, Alexander, T, Baldini, C, Gottenberg, J, Gruner, H, Hachulla, E, Mouthon, L, Orlandi, M, Pamfil, C, Pineton De Chambrun, M, Taglietti, M, Toplak, N, Van Daele, P, Van Laar, J, Bombardieri, S, Schneider, M, Smith, V, Cutolo, M, Mosca, M, Mariette, X, Romao V. C., Talarico R., Scire C. A., Vieira A., Alexander T., Baldini C., Gottenberg J. -E., Gruner H., Hachulla E., Mouthon L., Orlandi M., Pamfil C., Pineton De Chambrun M., Taglietti M., Toplak N., Van Daele P., Van Laar J. M., Bombardieri S., Schneider M., Smith V., Cutolo M., Mosca M., Mariette X., Romao, V, Talarico, R, Scire, C, Vieira, A, Alexander, T, Baldini, C, Gottenberg, J, Gruner, H, Hachulla, E, Mouthon, L, Orlandi, M, Pamfil, C, Pineton De Chambrun, M, Taglietti, M, Toplak, N, Van Daele, P, Van Laar, J, Bombardieri, S, Schneider, M, Smith, V, Cutolo, M, Mosca, M, Mariette, X, Romao V. C., Talarico R., Scire C. A., Vieira A., Alexander T., Baldini C., Gottenberg J. -E., Gruner H., Hachulla E., Mouthon L., Orlandi M., Pamfil C., Pineton De Chambrun M., Taglietti M., Toplak N., Van Daele P., Van Laar J. M., Bombardieri S., Schneider M., Smith V., Cutolo M., Mosca M., and Mariette X.

Abstract

Sjögren's syndrome (SS) is a complex autoimmune rheumatic disease that specifically targets salivary and lachrymal glands. As such, patients typically had ocular and oral dryness and salivary gland swelling. Moreover, skin, nasal and vaginal dryness are frequently present. In addition to dryness, musculoskeletal pain and fatigue are the hallmarks of this disease and constitute the classic symptom triad presented by the vast majority of patients. Up to 30% to 50 % of patients with SS may present systemic disease; moreover, there is an increased risk for the development of non-Hodgkin's lymphoma that occurs in a minority of patients. The present work was developed in the framework of the European Reference Network (ERN) dedicated to Rare and Complex Connective Tissue and Musculoskeletal Diseases (ReCONNET). In line with its goals of aiming to improve early diagnosis, treatment and care of rare connective and musculoskeletal diseases, ERN-ReCONNET set to review the current state of clinical practice guidelines (CPGs) in the rare and complex connective tissue diseases of interest of the network. Therefore, the present work was aimed at providing a state of the art of CPGs for SS.

Published
2018

6. Educational needs and preferences of young European clinicians and physician researchers working in the field of rheumatology

Author

Beyer, C, Ramiro, S, Sivera, F, Mandl, P, Machado, P, Ospelt, C, Molto, A, Radner, H, Iagnocco, A, Bijlsma, J, Lundberg, I, Grigoriou, A, Fanouriakis, A, Hueber, A, Maurer, B, Scire, C, Gaujoux-Viala, C, Karpec, D, Van Der Woude, D, Rimar, D, Deseatnicova, E, Nikiphorou, E, De Langhe, E, Haavardsholm, E, Starodubtseva, I, Nagy, G, Biliavska, I, Sznajd, J, Karlsson, J, Zepa, J, Cassar, K, Senolt, L, Ghukasyan, L, Baresic, M, Frank-Bertoncelj, M, Ziade, N, Gobejishvili, N, Ostojic, P, Ostgard, R, Dobrota, R, Shumnalieva, R, Talli, S, Panchal, S, Volpinari, S, Rannio, T, Romao, V, Beyer C., Ramiro S., Sivera F., Mandl P., MacHado P. M., Ospelt C., Molto A., Radner H., Iagnocco A., Bijlsma J. W., Lundberg I. E., Grigoriou A., Fanouriakis A., Hueber A., Maurer B., Scire C. A., Gaujoux-Viala C., Karpec D., Van Der Woude D., Rimar D., Deseatnicova E., Nikiphorou E., De Langhe E., Haavardsholm E. A., Starodubtseva I., Nagy G., Biliavska I. V., Sznajd J., Karlsson J. A., Zepa J., Cassar K., Senolt L., Ghukasyan L., Baresic M., Frank-Bertoncelj M., Ziade N., Gobejishvili N., Ostojic P., Ostgard R., Dobrota R., Shumnalieva R., Talli S., Panchal S., Volpinari S., Rannio T., Romao V. C., Beyer, C, Ramiro, S, Sivera, F, Mandl, P, Machado, P, Ospelt, C, Molto, A, Radner, H, Iagnocco, A, Bijlsma, J, Lundberg, I, Grigoriou, A, Fanouriakis, A, Hueber, A, Maurer, B, Scire, C, Gaujoux-Viala, C, Karpec, D, Van Der Woude, D, Rimar, D, Deseatnicova, E, Nikiphorou, E, De Langhe, E, Haavardsholm, E, Starodubtseva, I, Nagy, G, Biliavska, I, Sznajd, J, Karlsson, J, Zepa, J, Cassar, K, Senolt, L, Ghukasyan, L, Baresic, M, Frank-Bertoncelj, M, Ziade, N, Gobejishvili, N, Ostojic, P, Ostgard, R, Dobrota, R, Shumnalieva, R, Talli, S, Panchal, S, Volpinari, S, Rannio, T, Romao, V, Beyer C., Ramiro S., Sivera F., Mandl P., MacHado P. M., Ospelt C., Molto A., Radner H., Iagnocco A., Bijlsma J. W., Lundberg I. E., Grigoriou A., Fanouriakis A., Hueber A., Maurer B., Scire C. A., Gaujoux-Viala C., Karpec D., Van Der Woude D., Rimar D., Deseatnicova E., Nikiphorou E., De Langhe E., Haavardsholm E. A., Starodubtseva I., Nagy G., Biliavska I. V., Sznajd J., Karlsson J. A., Zepa J., Cassar K., Senolt L., Ghukasyan L., Baresic M., Frank-Bertoncelj M., Ziade N., Gobejishvili N., Ostojic P., Ostgard R., Dobrota R., Shumnalieva R., Talli S., Panchal S., Volpinari S., Rannio T., and Romao V. C.

Abstract

Objectives: To understand the educational needs and preferences of young clinicians and physician researchers in the field of rheumatology in Europe. Methods: An international online survey was performed as a joint venture of ESCET and EMEUNET. The survey assessed the acceptance of and the access to the current European League Against Rheumatism (EULAR) educational portfolio, as well as the unmet educational needs and learning preferences among individuals below the age of 40 years working in rheumatology in Europe. Results: Among 568 European clinicians and physician researchers, 65% indicated that the existing EULAR educational portfolio adequately covers their educational needs. Within the EULAR portfolio, the online course on rheumatic diseases and the postgraduate course were the most appreciated. Participants were very much in favour of new educational courses on imaging techniques, and 63% of participants indicated a particular interest in musculoskeletal ultrasound. A strong interest in refresher (60%) and general review (55%) courses was observed. Lack of funding was considered the major obstacle to participating in existing EULAR programmes. Finally, participants showed diverse preferences regarding learning modalities with common interests in live courses and conferences. Conclusions: EULAR's training opportunities are well appreciated among young clinicians and physician researchers in rheumatology. The results from this survey will help to develop EULAR's future educational portfolio.

Published
2016

8. OP0031 Tocilizumab is Associated with Higher CDai/Sdai Remission in Biologic-Naïve Rheumatoid Arthritis Patients – Data from Reuma.Pt: Table 1.

Author

Romao, V., primary, Santos, M., additional, Polido-Pereira, J., additional, Duarte, C., additional, Nero, P., additional, Miguel, C., additional, Costa, J., additional, Pimentel-Santos, F., additional, Barcelos, F., additional, Costa, L., additional, Melo Gomes, J., additional, Pereira da Silva, J., additional, Branco, J., additional, Canas da Silva, J., additional, Da Silva, J., additional, Fonseca, J., additional, and Canhao, H., additional

Published
2014
Full Text
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9. AB0451 Changes in DAS28, CDAI and SDAI are Associated with Biologic Class, Gender, Previous Biologic Therapy and ACPA/RF Status – Results from Reuma.PT

Author

Romao, V., primary, Santos, M., additional, Polido-Pereira, J., additional, Duarte, C., additional, Nero, P., additional, Miguel, C., additional, Costa, J., additional, Pimentel-Santos, F., additional, Barcelos, F., additional, Costa, L., additional, Melo Gomes, J., additional, Pereira da Silva, J., additional, Branco, J., additional, Canas da Silva, J., additional, Da Silva, J., additional, Fonseca, J., additional, and Canhao, H., additional

Published
2014
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11. AB0413 Hepatitis B Serologic Profile and Reactivation in Rheumatic Patients Treated with Biological Therapies – Single Centre Experience

Author

Romao, V., primary, Saavedra, M., additional, Costa, M., additional, Macieira, C., additional, Vieira-Sousa, E., additional, Ramos, F., additional, Resende, C., additional, Capela, S., additional, Barros, R., additional, Polido-Pereira, J., additional, Rodrigues, A., additional, Madruga-Dias, J., additional, Campanilho-Marques, R., additional, Ponte, C., additional, Castro, A., additional, Furtado, C., additional, Fernandes, S., additional, Gonçalves, M., additional, Pereira da Silva, J., additional, Canhao, H., additional, and Fonseca, J., additional

Published
2014
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14. Portuguese recommendations for the use of biological and targeted synthetic disease-modifying antirheumatic drugs in patients with rheumatoid arthritis-2020 update

Author

Fernandes, B. M., Guimaraes, F., Almeida, D. E., Neto, A., Tavares-Costa, J., Ribeiro, A. R., Quintal, A., Pereira, J. P., Silva, L., Novoa, T. S., Faustino, A., Vaz, C., Khmelinskii, N., Samoes, B., Eduardo Dourado, Silva, J. L., Barcelos, A., Mariz, E., Guerra, M., Santos, M. J., Silverio-Antonio, M., Teixeira, R. L., Romao, V. C., Santos, H., Santos-Faria, D., Azevedo, S., Rodrigues, A., Dias, J. M., Lopes, C., Pinto, P., Couto, M., Miranda, L. C., Bernardo, A., Cruz, M., Teixeira, F., Mourao, A. F., Teixeira, V., Cordeiro, A., Barreira, S., Ines, L. S., Capela, S., Sepriano, A., Canhao, H., Fonseca, J. E., Duarte, C., and Bernardes, M.

15. 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

Author

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

Subjects
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.

Published
2022

16. Sjogren's syndrome: state of the art on clinical practice guidelines

Author

Stefano Bombardieri, Nataša Toplak, Paul L A van Daele, Ana Vieira, Vanessa Smith, Marta Mosca, Heidi Gruner, Martina Orlandi, Jacques-Eric Gottenberg, Rosaria Talarico, Marco Taglietti, Eric Hachulla, Jacob M van Laar, Matthias Schneider, Carlo Alberto Scirè, Tobias Alexander, Cristina Pamfil, Maurizio Cutolo, Luc Mouthon, Vasco C. Romão, Marc Pineton de Chambrun, Xavier Mariette, Chiara Baldini, Immunology, Internal Medicine, Centro Hospitalar Universitário Lisboa Norte [Lisbon, Portugal] (CHULN), Azienda Ospedaliero-Universitaria Pisana [Pisa, Italy], Università degli Studi di Ferrara = University of Ferrara (UniFE), Liga Portuguesa Contra as Doenças Reumaticas (LPCDR), Charité - UniversitätsMedizin = Charité - University Hospital [Berlin], University of Pisa - Università di Pisa, Immuno-Rhumatologie Moléculaire, Université de Strasbourg (UNISTRA)-Institut National de la Santé et de la Recherche Médicale (INSERM), Les Hôpitaux Universitaires de Strasbourg (HUS), Centro Hospitalar de Lisboa Central E.P.E, Institute for Translational Research in Inflammation - U 1286 (INFINITE (Ex-Liric)), Institut National de la Santé et de la Recherche Médicale (INSERM)-Université de Lille-Centre Hospitalier Régional Universitaire [Lille] (CHRU Lille), CHU Lille, Hôpital Cochin [AP-HP], Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP), Université Paris Descartes - Paris 5 (UPD5), Università degli Studi di Firenze = University of Florence (UniFI), CHU Pitié-Salpêtrière [AP-HP], Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP)-Sorbonne Université (SU), Sorbonne Université (SU), Azienda Socio Sanitaria Territoriale Spedali Civili di Brescia [Brescia], University Medical Centre Ljubljana [Ljubljana, Slovenia] (UMCL), Erasmus University Medical Center [Rotterdam] (Erasmus MC), Utrecht University [Utrecht], University Hospital Düsseldorf, Ghent University Hospital, Università degli studi di Genova = University of Genoa (UniGe), Immunologie des Maladies Virales et Autoimmunes (IMVA - U1184), Université Paris-Sud - Paris 11 (UP11)-Commissariat à l'énergie atomique et aux énergies alternatives (CEA)-Institut National de la Santé et de la Recherche Médicale (INSERM), Hôpitaux Universitaires Paris Sud [AP-HP] (HUPS), Romao, V, Talarico, R, Scire, C, Vieira, A, Alexander, T, Baldini, C, Gottenberg, J, Gruner, H, Hachulla, E, Mouthon, L, Orlandi, M, Pamfil, C, Pineton De Chambrun, M, Taglietti, M, Toplak, N, Van Daele, P, Van Laar, J, Bombardieri, S, Schneider, M, Smith, V, Cutolo, M, Mosca, M, and Mariette, X

Subjects
0301 basic medicine, Systemic disease, [SDV]Life Sciences [q-bio], Sjögren's Syndrome, ERN ReCONNET, European Reference Networks, Sjögren’s syndrome, clinical practice guidelines, unmet needs, Disease, RECOMMENDATIONS, 0302 clinical medicine, Medicine and Health Sciences, Immunology and Allergy, CLASSIFICATION CRITERIA, DATA-DRIVEN, clinical practice guidelines, ERN ReCONNET, European Reference Networks, Sjögren's syndrome, unmet needs, unmet need, Clinical Practice, medicine.anatomical_structure, TRIALS, Sjögren's syndrome, clinical practice guideline, medicine.medical_specialty, Immunology, Connective tissue, European Reference Network, AMERICAN-COLLEGE, NO, 03 medical and health sciences, Rheumatology, Salivary gland swelling, medicine, MANAGEMENT, DAMAGE INDEX, 030203 arthritis & rheumatology, Sjögren Syndrome, business.industry, HCC MED, medicine.disease, Dermatology, Lymphoma, 030104 developmental biology, Increased risk, Sjogren s, business, CONSENSUS
Abstract

Sjögren's syndrome (SS) is a complex autoimmune rheumatic disease that specifically targets salivary and lachrymal glands. As such, patients typically had ocular and oral dryness and salivary gland swelling. Moreover, skin, nasal and vaginal dryness are frequently present. In addition to dryness, musculoskeletal pain and fatigue are the hallmarks of this disease and constitute the classic symptom triad presented by the vast majority of patients. Up to 30% to 50 % of patients with SS may present systemic disease; moreover, there is an increased risk for the development of non-Hodgkin's lymphoma that occurs in a minority of patients. The present work was developed in the framework of the European Reference Network (ERN) dedicated to Rare and Complex Connective Tissue and Musculoskeletal Diseases (ReCONNET). In line with its goals of aiming to improve early diagnosis, treatment and care of rare connective and musculoskeletal diseases, ERN-ReCONNET set to review the current state of clinical practice guidelines (CPGs) in the rare and complex connective tissue diseases of interest of the network. Therefore, the present work was aimed at providing a state of the art of CPGs for SS. info:eu-repo/semantics/publishedVersion

Published
2018

17. Educational needs and preferences of young European clinicians and physician researchers working in the field of rheumatology

Author

Beyer, Christian, Ramiro, Sofia, Sivera, Francisca, Mandl, Peter, MacHado, Pedro M., Ospelt, Caroline, Moltó, Anna, Radner, Helga, Iagnocco, Annamaria, Bijlsma, Johannes W., Lundberg, Ingrid E., Grigoriou, Antigoni, Fanouriakis, Antonis, Hueber, Axel, Maurer, Britta, Scirè, Carlo A., Gaujoux-Viala, Cécile, Karpec, Diana, Van Der Woude, Diane, Rimar, Doron, Deseatnicova, Elena, Nikiphorou, Elena, De Langhe, Ellen, Haavardsholm, Espen A., Starodubtseva, Irina, Nagy, György, Biliavska, Iuliia V., Sznajd, Jan, Karlsson, Johan A., Zepa, Julija, Cassar, Karen, Šenolt, Ladislav, Ghukasyan, Liana, Barešić, Marko, Frank-Bertoncelj, Mojca, Ziade, Nelly, Gobejishvili, Nino, Ostojic, Predrag, Østgård, René, Dobrota, Rucsandra, Shumnalieva, Russka, Tälli, Sandra, Panchal, Sonia, Volpinari, Stefania, Rannio, Tuomas, Romão, Vasco C., Medizinische Universität Wien = Medical University of Vienna, Service de rhumatologie [CHU Cochin], Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP)-Hôpital Cochin [AP-HP], Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP), Centre de Recherche Épidémiologie et Statistique Sorbonne Paris Cité (CRESS (U1153 / UMR_A_1125 / UMR_S_1153)), Université Paris Diderot - Paris 7 (UPD7)-Université Sorbonne Paris Cité (USPC)-Université Paris Descartes - Paris 5 (UPD5)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Institut National de la Recherche Agronomique (INRA), Université Paris Descartes - Paris 5 (UPD5), Hôpital Cochin [AP-HP], Université Sorbonne Paris Cité (USPC), Università degli Studi di Roma 'La Sapienza' = Sapienza University [Rome], University Medical Center [Utrecht], Karolinska Institutet [Stockholm], Assistance publique - Hôpitaux de Paris (AP-HP) (APHP)-CHU Cochin [AP-HP], Université Paris Diderot - Paris 7 (UPD7)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Institut National de la Recherche Agronomique (INRA)-Université Paris Descartes - Paris 5 (UPD5)-Université Sorbonne Paris Cité (USPC), CHU Cochin [AP-HP], Assistance publique - Hôpitaux de Paris (AP-HP) (APHP), Sapienza University [Rome], Beyer, C, Ramiro, S, Sivera, F, Mandl, P, Machado, P, Ospelt, C, Molto, A, Radner, H, Iagnocco, A, Bijlsma, J, Lundberg, I, Grigoriou, A, Fanouriakis, A, Hueber, A, Maurer, B, Scire, C, Gaujoux-Viala, C, Karpec, D, Van Der Woude, D, Rimar, D, Deseatnicova, E, Nikiphorou, E, De Langhe, E, Haavardsholm, E, Starodubtseva, I, Nagy, G, Biliavska, I, Sznajd, J, Karlsson, J, Zepa, J, Cassar, K, Senolt, L, Ghukasyan, L, Baresic, M, Frank-Bertoncelj, M, Ziade, N, Gobejishvili, N, Ostojic, P, Ostgard, R, Dobrota, R, Shumnalieva, R, Talli, S, Panchal, S, Volpinari, S, Rannio, T, Romao, V, 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), and CHU Cochin [AP-HP]-Assistance publique - Hôpitaux de Paris (AP-HP) (APHP)

Subjects
musculoskeletal diseases, medicine.medical_specialty, Immunology, education, Health services research, Magnetic Resonance Imaging, Ultrasonography, Rheumatology, Immunology and Allergy, Joint venture, Musculoskeletal ultrasound, League, Education, NO, 03 medical and health sciences, 0302 clinical medicine, Internal medicine, medicine, 030212 general & internal medicine, 030203 arthritis & rheumatology, Modalities, business.industry, 4. Education, medicine.disease, Family medicine, Portfolio, business, Rheumatism, [SDV.MHEP]Life Sciences [q-bio]/Human health and pathology
Abstract

International audience; OBJECTIVES:To understand the educational needs and preferences of young clinicians and physician researchers in the field of rheumatology in Europe.METHODS:An international online survey was performed as a joint venture of ESCET and EMEUNET. The survey assessed the acceptance of and the access to the current European League Against Rheumatism (EULAR) educational portfolio, as well as the unmet educational needs and learning preferences among individuals below the age of 40 years working in rheumatology in Europe.RESULTS:Among 568 European clinicians and physician researchers, 65% indicated that the existing EULAR educational portfolio adequately covers their educational needs. Within the EULAR portfolio, the online course on rheumatic diseases and the postgraduate course were the most appreciated. Participants were very much in favour of new educational courses on imaging techniques, and 63% of participants indicated a particular interest in musculoskeletal ultrasound. A strong interest in refresher (60%) and general review (55%) courses was observed. Lack of funding was considered the major obstacle to participating in existing EULAR programmes. Finally, participants showed diverse preferences regarding learning modalities with common interests in live courses and conferences.CONCLUSIONS:EULAR's training opportunities are well appreciated among young clinicians and physician researchers in rheumatology. The results from this survey will help to develop EULAR's future educational portfolio.

Published
2016

18. Limits of prosthetic rehabilitation of cocaine-induced midline destructive lesions: Time to change the paradigm.

Author

Mense C, Romao V, Silvestri F, and Lan R

Abstract

The steady rise in cocaine consumption, particularly in its snorted form, has led to the increased incidence of cocaine-induced midline destructive lesions (CIMDLs), a severe condition resulting from chronic cocaine use that leads to significant tissue destruction in the nasal and palatal regions. Four patients with CIMDLs are presented, all characterized by nasopalatine perforation. Each patient reported a spontaneous onset of tissue loss in the hard palate near the midline, with the affected area ranging from 2.3 to 5.1 cm². All patients had a history of psychiatric conditions, including depressive episodes but without other significant medical conditions, which contributed to an average delay of 9 months before seeking initial medical consultation. Treatment, which included the use of palatal obturators to improve quality of life, remains nonstandardized and, combined with the patients' continued cocaine use and refusal of addiction care, led to poor follow-up and persistent tissue damage. This clinical report underscores the need for a paradigm shift in managing CIMDLs, emphasizing the integration of addiction treatment and psychological support with prosthetic rehabilitation to optimize long-term outcomes and prevent relapse., (Copyright © 2024 Editorial Council for The Journal of Prosthetic Dentistry. Published by Elsevier Inc. All rights reserved.)

Published
2024
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