Výsledky vyhledávání - "Ilaria, Galetti"

Akademický článek

The Rising Challenge of Poor Health Literacy of Patients with Systemic Sclerosis: Preliminary Data Identify Important Unmet Needs in an Italian Cohort

Autor: Khadija El Aoufy, Maria Ramona Melis, Paolo Iovino, Stefano Bambi, Chiara Lorini, Guglielmo Bonaccorsi, Ilaria Galetti, Carla Garbagnati, Paola Canziani, Silvia Tonolo, Marco Mitola, Serena Guiducci, Daniel E. Furst, Marco Matucci-Cerinic, Laura Rasero, Silvia Bellando-Randone

Publikováno v: Nursing Reports, Vol 14, Iss 1, Pp 556-565 (2024)

Rationale and aim: Health literacy (HL) is pivotal for the successful self-management of chronic diseases. Little HL information is currently available in SSc patients; therefore, the present study aims at evaluating the HL levels in an Italian cohor

Externí odkaz: https://doaj.org/article/f815d82495fc4115913d115e3b127fd5

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Akademický článek

Exploring patient’s experience and unmet needs on pregnancy and family planning in rare and complex connective tissue diseases: a narrative medicine approach

Publikováno v: RMD Open, Vol 8, Iss 2 (2022)

Objective The aim of this work is to explore patient’ unmet needs of rare and complex rheumatic tissue diseases (rCTDs) patients during pregnancy and its planning by means of the narrative-based medicine (NBM) approach.Methods A panel of nine rCTDs

Externí odkaz: https://doaj.org/article/965efde61a6941e7834548222d68ed60

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Akademický článek

Collaboration between patient organisations and a clinical research sponsor in a rare disease condition: learnings from a community advisory board and best practice for future collaborations

Autor: Ilaria Galetti, Maureen Sauve, Catarina Leite, Joep Welling, Martina Gahlemann, Annelise Roennow, Robert J Riggs, Ann Tyrrell Kennedy, Edith Brown, Alex Gonzalez, Alexandra Paula Portales Guiraud, François Houÿez, Rob Camp, Annie Gilbert, Lizette Moros, Jose Luis Luna Flores, Friedrich Schmidt, Wiebke Sauter, Henrik Finnern

Publikováno v: BMJ Open, Vol 10, Iss 12 (2020)

Introduction Transparent collaborations between patient organisations (POs) and clinical research sponsors (CRS) can identify and address the unmet needs of patients and caregivers. These insights can improve clinical trial participant experience and

Externí odkaz: https://doaj.org/article/90c0fae509b94a35b5a69e0ab34db997

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Akademický článek

Clinical practice guidelines adherence, knowledge and awareness in rare and complex connective tissue diseases across Europe: results from the first ERN ReCONNET survey

Autor: Rosaria Talarico, Frederic Houssiau, Stefano Bombardieri, Gerd Burmester, Ilaria Galetti, Eric Hachulla, Ulf Mueller-Ladner, Matthias Schneider, Vanessa Smith, Maurizio Cutolo, Marta Mosca, Jacob M van Laar, Charissa Frank, Ana Vieira, Giuseppe Turchetti, Joao Fonseca, Diana Marinello

Publikováno v: RMD Open, Vol 6, Iss 2 (2020)

Introduction The European Reference Network (ERN) ReCONNET is the ERN aimed at improving the management of rare and complex connective tissue and musculoskeletal diseases (rCTDs) across the European Union (EU). In the mission of ERN ReCONNET, clinica

Externí odkaz: https://doaj.org/article/150458132ac547a4b417f1b84f1cd975

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How do systemic sclerosis manifestations influence patients’ lives? Results from a survey on patients and caregivers

Autor: Laura Brogelli, Ilaria Galetti, Sara di Nunzio, Valentina Mirisola, Carla Garbagnati

Publikováno v: Current Medical Research and Opinion. 37:5-15

To investigate the patient- and caregiver-reported impact of systemic sclerosis (SSc) manifestations (hand/feet/joint involvement and pulmonary complications) on the diagnostic and therapeutic journey, working productivity, and social life.Two questi

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::2aefc004f599ceca5f475ff4503d74c8
https://doi.org/10.1080/03007995.2021.1992371

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