Výsledky vyhledávání - "Tyrrell Kennedy A"

Akademický článek

Performance of the EULAR Systemic sclerosis Impact of Disease (ScleroID) questionnaire as a patient-reported outcome measure for patients with diffuse systemic sclerosis

Publikováno v: RMD Open, Vol 10, Iss 4 (2024)

Objective Systemic sclerosis Impact of Disease (ScleroID) is the first comprehensive patient-reported outcome measure (PROM) specifically developed for systemic sclerosis (SSc). We investigated the performance of ScleroID in patients with diffuse cut

Externí odkaz: https://doaj.org/article/7b4b4609e7d54da5a3ff297304e83bed

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Akademický článek

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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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Impaired quality of life in systemic sclerosis and patient perception of the disease: A large international survey

Autor: Kerry Connolly, Fazia Amrouche, Camelia Frantz, Yannick Allanore, Jérôme Avouac, Dominique Godard, Marco Matucci-Cerinic, John Varga, Ann Tyrrell Kennedy, Oliver Distler

Publikováno v: Seminars in arthritis and rheumatism. 46(1)

The purpose of this study was to assess health-related quality of life (HRQoL) and disease perception in a large, international group of patients with systemic sclerosis (SSc).We placed a standardized questionnaire on a website for patient access. So

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::6dcdc3822fe8c0057135eb89881ed6fe
https://pubmed.ncbi.nlm.nih.gov/27132536

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Content of non-pharmacological care for systemic sclerosis and educational needs of European health professionals: a EUSHNet survey

Autor: Linda M, Willems, Anthony C, Redmond, Tanja A, Stamm, Carina, Boström, Saskia, Decuman, Ann Tyrrell, Kennedy, Jadranka, Brozd, Sanja, Roškar, Vanessa, Smith, Theodora P M, Vliet Vlieland, Cornelia H M, van den Ende

Publikováno v: Clinical and experimental rheumatology. 33(4 Suppl 91)

To describe the non-pharmacological care in systemic sclerosis (SSc) provided by European health professionals (HPs) including referrals, treatment targets, interventions, and educational needs.In this observational study, European HPs working in SSc

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=pmid________::b00527f3681722ba49efbb2785067f1d
https://pubmed.ncbi.nlm.nih.gov/26339894

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