Literature DB >> 25616560

The imperative for patient-centred research to develop better quality services in rare diseases.

Karen Facey1, Helle Ploug Hansen.   

Abstract

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Year:  2015        PMID： 25616560     DOI： 10.1007/s40271-015-0113-4

Source DB:  PubMed          Journal:  Patient        ISSN： 1178-1653            Impact factor:   3.883


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  12 in total

1.  An Asia pacific alliance for rare diseases.

Authors:  Durhane Wong-Rieger; William Claxton; Richard Vines; Carmencita Padilla; Kin Ping Tsang; Lucy Hickinbotham
Journal:  Patient       Date:  2015-02       Impact factor: 3.883

2.  Challenges in measuring the societal value of orphan drugs: insights from a canadian stated preference survey.

Authors:  Nick Dragojlovic; Shirin Rizzardo; Nick Bansback; Craig Mitton; Carlo A Marra; Larry D Lynd
Journal:  Patient       Date:  2015-02       Impact factor: 3.883

3.  Personal reflections of a patient representative in an appraisal committee.

Authors:  Cees Smit
Journal:  Patient       Date:  2015-02       Impact factor: 3.883

Review 4.  Generating health technology assessment evidence for rare diseases.

Authors:  Karen Facey; Alicia Granados; Gordon Guyatt; Alastair Kent; Nilay Shah; Gert Jan van der Wilt; Durhane Wong-Rieger
Journal:  Int J Technol Assess Health Care       Date:  2014-11-19       Impact factor: 2.188

5.  Peer Support and Mentorship in a US Rare Disease Community: Findings from the Cystinosis in Emerging Adulthood Study.

Authors:  Maya Doyle
Journal:  Patient       Date:  2015-02       Impact factor: 3.883

6.  How Narrative Journalistic Stories Can Communicate the Individual's Challenges of Daily Living with Amyotrophic Lateral Sclerosis.

Authors:  Jørgen Jeppesen; Jes Rahbek; Ole Gredal; Helle Ploug Hansen
Journal:  Patient       Date:  2015-02       Impact factor: 3.883

7.  Caregiver preferences for emerging duchenne muscular dystrophy treatments: a comparison of best-worst scaling and conjoint analysis.

Authors:  Ilene L Hollin; Holly L Peay; John F P Bridges
Journal:  Patient       Date:  2015-02       Impact factor: 3.883

Review 8.  Involving patients in reducing decision uncertainties around orphan and ultra-orphan drugs: a rare opportunity?

Authors:  Devidas Menon; Tania Stafinski; Andrea Dunn; Hilary Short
Journal:  Patient       Date:  2015-02       Impact factor: 3.883

9.  Identifying the benefits and risks of emerging treatments for idiopathic pulmonary fibrosis: a qualitative study.

Authors:  John F P Bridges; Victoria Federico Paly; Elizabeth Barker; Dolly Kervitsky
Journal:  Patient       Date:  2015-02       Impact factor: 3.883

10.  Developing a patient-directed policy framework for managing orphan and ultra-orphan drugs throughout their lifecycle.

Authors:  Devidas Menon; Tania Stafinski; Andrea Dunn; Durhane Wong-Rieger
Journal:  Patient       Date:  2015-02       Impact factor: 3.883
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  2 in total

Review 1.  Defining and characterising a toolkit for the development of a successful European registry for rare liver diseases: a model for building a rare disease registry.

Authors:  Marinos Pericleous; Claire Kelly; Michael Schilsky; Anil Dhawan; Aftab Ala
Journal:  Clin Med (Lond)       Date:  2022-06-15       Impact factor: 5.410

2.  Public and patient involvement in needs assessment and social innovation: a people-centred approach to care and research for congenital disorders of glycosylation.

Authors:  Cláudia de Freitas; Vanessa Dos Reis; Susana Silva; Paula A Videira; Eva Morava; Jaak Jaeken
Journal:  BMC Health Serv Res       Date:  2017-09-26       Impact factor: 2.655
  2 in total

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