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  • Bousquet, J.; Onorato, G. L.; Bachert, C.; Barbolini, M.; Bedbrook, A.; Bjermer, L.; de Sousa, J. Correia; Chavannes, N. H.; Cruz, A. A.; Keenoy, E. De Manuel; Devillier, P.; Fonseca, J.; Hun, S.; Kostka, T.; Hellings, P. W.; Illario, M.; Ivancevich, J. C.; Larenas-Linnemann, D.; Millot-Keurinck, J.; Ryan, D.; Samolinski, B.; Sheikh, A.; Yorgancioglu, A.; Agache, I.; Arnavielhe, S.; Bewick, M.; Annesi-Maesano, I.; Anto, J. M.; Bergmann, K. C.; Bindslev-Jensen, C.; Bosnic-Anticevich, S.; Bouchard, J.; Caimmi, D. P.; Camargos, P.; Canonica, G. W.; Cardona, V.; Carriazo, A. M.; Cingi, C.; Colgan, E.; Custovic, A.; Dahl, R.; Demoly, P.; De Vries, G.; Fokkens, W. J.; Fontaine, J. F.; Gemicioglu, B.; Guldemond, N.; Gutter, Z.; Haahtela, T.; Hellqvist-Dahl, B.; Jares, E.; Joos, G.; Just, J.; Khaltaev, N.; Keil, T.; Klimek, L.; Kowalski, M. L.; Kull, I.; Kuna, P.; Kvedariene, V.; Laune, D.; Louis, R.; Magnan, A.; Malva, J.; Mathieu-Dupas, E.; Melen, E.; Menditto, E.; Morais-Almeida, M.; Mosges, R.; Mullol, J.; Murray, R.; Neffen, H.; O'Hehir, R.; Palkonen, S.; Papadopoulos, N. G.; Passalacqua, G.; Pepin, J. L.; Portejoie, F.; Price, D.; Pugin, B.; Raciborski, F.; Simons, F. E. R.; Sova, M.; Spranger, O.; Stellato, C.; Bom, A. Todo; Tomazic, P. V.; Triggiani, M.; Valero, A.; Valovirta, E.; VandenPlas, O.; Valiulis, A.; Van Eerd, M.; Ventura, M. T.; Wickman, M.; Young, I.; Zuberbier, T.; Zurkuhlen, A.; Senn, A. (2017)
    A Good Practice is a practice that works well, produces good results, and is recommended as a model. MACVIA-ARIA Sentinel Network (MASK), the new Allergic Rhinitis and its Impact on Asthma (ARIA) initiative, is an example of a Good Practice focusing on the implementation of multi-sectoral care pathways using emerging technologies with real life data in rhinitis and asthma multi-morbidity. The European Union Joint Action on Chronic Diseases and Promoting Healthy Ageing across the Life Cycle (JA-CHRODIS) has developed a checklist of 28 items for the evaluation of Good Practices. SUNFRAIL (Reference Sites Network for Prevention and Care of Frailty and Chronic Conditions in community dwelling persons of EU Countries), a European Union project, assessed whether MASK is in line with the 28 items of JA-CHRODIS. A short summary was proposed for each item and 18 experts, all members of ARIA and SUNFRAIL from 12 countries, assessed the 28 items using a Survey Monkey-based questionnaire. A visual analogue scale (VAS) from 0 (strongly disagree) to 100 (strongly agree) was used. Agreement equal or over 75% was observed for 14 items (50%). MASK is following the JA-CHRODIS recommendations for the evaluation of Good Practices.
  • MASK Study Grp; Bousquet, J.; Bedbrook, A.; Czarlewski, W.; Haahtela, T.; Valovirta, E.; Vasankari, T.; Toppila-Salmi, S.; Salimäki, Johanna; Kuitunen, M.; Wallace, D. V. (2019)
    AimsMobile Airways Sentinel NetworK (MASK) belongs to the Fondation Partenariale MACVIA-LR of Montpellier, France and aims to provide an active and healthy life to rhinitis sufferers and to those with asthma multimorbidity across the life cycle, whatever their gender or socio-economic status, in order to reduce health and social inequities incurred by the disease and to improve the digital transformation of health and care. The ultimate goal is to change the management strategy in chronic diseases.MethodsMASK implements ICT technologies for individualized and predictive medicine to develop novel care pathways by a multi-disciplinary group centred around the patients.StakeholdersInclude patients, health care professionals (pharmacists and physicians), authorities, patient's associations, private and public sectors.ResultsMASK is deployed in 23 countries and 17 languages. 26,000 users have registered.EU grants (2018)MASK is participating in EU projects (POLLAR: impact of air POLLution in Asthma and Rhinitis, EIT Health, DigitalHealthEurope, Euriphi and Vigour).Lessons learnt(i) Adherence to treatment is the major problem of allergic disease, (ii) Self-management strategies should be considerably expanded (behavioural), (iii) Change management is essential in allergic diseases, (iv) Education strategies should be reconsidered using a patient-centred approach and (v) Lessons learnt for allergic diseases can be expanded to chronic diseases.
  • Lauseker, Michael; Bachl, Katharina; Turkina, Anna; Faber, Edgar; Prejzner, Witold; Olsson-Stromberg, Ulla; Baccarani, Michele; Lomaia, Elza; Zackova, Daniela; Ossenkoppele, Gert; Griskevicius, Laimonas; Schubert-Fritschle, Gabriele; Sacha, Tomasz; Heibl, Sonja; Koskenvesa, Perttu; Bogdanovic, Andrija; Clark, Richard E.; Guilhot, Joelle; Hoffmann, Verena S.; Hasford, Joerg; Hochhaus, Andreas; Pfirrmann, Markus (2019)
    Chronic myeloid leukemia (CML) is usually diagnosed in chronic phase, yet there is a small percentage of patients that is diagnosed in accelerated phase or blast crisis. Due to this rarity, little is known about the prognosis of these patients. Our aim was to identify prognostic factors for this cohort. We identified 283 patients in the EUTOS population-based and out-study registries that were diagnosed in advanced phase. Nearly all patients were treated with tyrosine kinase inhibitors. Median survival in this heterogeneous cohort was 8.2 years. When comparing patients with more than 30% blasts to those with 20-29% blasts, the hazard ratio (HR) was 1.32 (95%-confidence interval (CI): [0.7-2.6]). Patients with 20-29% blasts had a significantly higher risk than patients with less than 20% blasts (HR: 2.24, 95%-CI: [1.2-4.0], P = .008). We found that the blast count was the most important prognostic factor; however, age, hemoglobin, basophils and other chromosomal aberrations should be considered as well. The ELTS score was able to define two groups (high risk vs non-high risk) with an HR of 3.01 (95%-CI: [1.81-5.00], P <.001). Regarding the contrasting definitions of blast crisis, our data clearly supported the 20% cut-off over the 30% cut-off in this cohort. Based on our results, we conclude that a one-phase rather than a two-phase categorization of de novo advanced phase CML patients is appropriate.