Characteristics and treatment regimens across ERS SHARP severe asthma registries

Bragt, Job J.M.H. van; Adcock, Ian M.; Anderson, Gary P.; Bel, Elisabeth H.; Braunstahl, Gert‐Jan; Brinke, Anneke ten; Busby, John; Canonica, Giorgio Walter; Cao, Hui; Chung, Kian Fan; Csoma, Zsuzsanna; Davies, Donna E.; Dahlén, Barbro; Djukanovic, R.; Genton, Céline; Gibson-Latimer, Toni; Hamerlijnck, Dominique; Heaney, Liam G.; Heuvelin, Elise; Horváth, Ildikó; Korn, Stephanie; Kots, Maxim; Kuna, Piotr; Kwon, Namhee; Louis, Renaud; Naddaf, Riad; Plaza, Vicente; Barbón, David Ramos; Richards, Levi B.; Škrgat, Sabina; Weersink, Els J.M.; Yasinska, Valentyna; Wagers, Scott; Zee, Anke H. Maitland‐van der

doi:10.1183/13993003.congress-2019.oa5354

Cited by 17 publications

(18 citation statements)

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“…Compared to these other studies, the COVID-19 cases in our study were clearly more severe. We can only speculate about the causes for this higher incidence of severe cases, but one important difference was the relatively high proportion of patients in the RAPSODI population who had adult-onset asthma, were non-atopic and had been previously on chronic oral corticosteroid treatment [ 27 ].…”

Section: Discussionmentioning

confidence: 99%

Poor outcome of SARS-CoV-2 infection in patients with severe asthma on biologic therapy

Eger¹,

Hashimoto²,

Braunstahl³

et al. 2021

Respiratory Medicine

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Section: Discussionmentioning

confidence: 99%

Poor outcome of SARS-CoV-2 infection in patients with severe asthma on biologic therapy

Eger¹,

Hashimoto²,

Braunstahl³

et al. 2021

Respiratory Medicine

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“…However, a number of challenges and questions remain. Oral corticosteroids are still widely used to achieve control in many individuals with severe asthma, despite major side-effects that can lead to significant co-morbidity [3,4].…”

Section: Introductionmentioning

confidence: 99%

“…There is a rising sentiment that classical clinical measurements of the signs, as well as currently used patient reported outcomes (PROs), do not reflect symptoms and outcomes that patients care about the most. In addition, there is a perception that there are differences in the management of severe asthma across Europe [4], but there is only minimal evidence to support such perceptions. It is a well stated goal to deliver the highest quality and patient centred care to all individuals with severe asthma.…”

Section: Introductionmentioning

confidence: 99%

SHARP: enabling generation of real-world evidence on a pan-European scale to improve the lives of individuals with severe asthma

et al. 2021

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IntroductionReal world evidence is important to help unravel unanswered problems in severe asthma and is valuable to better understand the patient experience and common clinical practice.AimThe Severe Heterogeneous Asthma Registry, Patient-centred (SHARP) Clinical Research Collaboration (CRC) is created as a network of national registries and severe asthma centres that work together to perform registry based real world research and clinical studies on a pan-European scale.The CRCSuch collaboration requires a new, innovative design to overcome the many issues that arise with large-scale data collection across national borders. SHARP has developed a platform that offers a federated analysis approach where national registry data are transformed and integrated into a common data model (CDM). The CDM then allows a local analysis of de-identified patient data and subsequent aggregate (meta-)analysis. To facilitate an easily accessible way to set up new registries, SHARP enables new registries to take part in a central database, based on already proven technology. Next to being economical, this linkage ensures data from different SHARP central members to be comparable.The FutureTechnological advancements lead to an ever-expanding rate of patient data that will be collected; with the collective effort of the pan-European severe asthma research community SHARP hopes to ensure that they are well equipped to enter a new era of medical research, with the ultimate goal to positively impact the lives of patients with severe asthma.

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“…In the field of respiratory conditions, a variety of organizations have been successful in involving (adult) patients in international scientific congresses, 13 task forces, research (priority) studies, [14][15][16][17][18] and international consortia. 7,19 Despite the growing awareness of its value, the pediatric perspective is often overlooked and there is a lack of knowledge of how to engage children in a meaningful way at an organizational level. 20 Practice shows that youth engagement in hospital settings is not simple.…”

Section: Introductionmentioning

confidence: 99%

Adolescents' experiences with patient engagement in respiratory medicine

Groot

Dedding

Slob

et al. 2020

Pediatric Pulmonology

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Objective Adolescent engagement in decision‐making processes in health care and research in the field of chronic respiratory diseases is rare but increasingly recognized as important. The aim of this study was to reflect on adolescents' motives and experiences in the process of establishing an advisory council for adolescents with a chronic respiratory disease. Methods A qualitative evaluation study was undertaken to assess the process of starting an advisory youth council in a tertiary hospital in the Netherlands. Data collection consisted of observations of council meetings, in‐depth interviews with youth council members, and moderated group discussions. Data were analyzed using thematic analysis to explore the experiences of the council members (n = 9, aged 12–18 years, all with a chronic respiratory disease). Two‐hour council meetings took place in the hospital to provide solicited and unsolicited advice to improve research and care. Results Three themes were identified as motives for adolescents to engage in an advisory council: (1) experience of fun and becoming empowered by their illness; (2) the value of peer support and contact; and (3) being able to contribute to care and research. The council's output consisted of solicited advice on information leaflets for patients, study procedures, and dietary menu options for hospitalized children. The council struggled to have their unsolicited advice heard within the hospital. Conclusions Council members experienced engagement as beneficial at the individual, group, and organizational levels. However, meaningful youth engagement requires connectedness with, and official support from, officials at all levels within an organization.

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Characteristics and treatment regimens across ERS SHARP severe asthma registries

Cited by 17 publications

References 0 publications

Poor outcome of SARS-CoV-2 infection in patients with severe asthma on biologic therapy

Poor outcome of SARS-CoV-2 infection in patients with severe asthma on biologic therapy

SHARP: enabling generation of real-world evidence on a pan-European scale to improve the lives of individuals with severe asthma

Adolescents' experiences with patient engagement in respiratory medicine

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