Literature DB >> 18464306

Development of a core set of domains for data collection in cohorts of patients with ankylosing spondylitis receiving anti-tumor necrosis factor-alpha therapy.

Jane Zochling1, Joachim Sieper, Désirée van der Heijde, Jürgen Braun.   

Abstract

OBJECTIVE: To create a core set of measurement concepts for use in the creation and maintenance of anti-tumor necrosis factor-alpha patient registries in ankylosing spondylitis (AS).
METHODS: A Delphi-based approach was used to identify elements that best identify a patient's clinical state, disease progression, and potential drug-related toxicities. Decision-making was based on systematic literature reviews and clinical experience and expertise.
RESULTS: A core set of measurement domains was defined including disease activity and physical function outcomes. Comparison with domains used in existing AS registries showed excellent agreement with current practice.
CONCLUSION: This core set is a basis for data collection across AS populations.

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Year:  2008        PMID: 18464306

Source DB:  PubMed          Journal:  J Rheumatol        ISSN: 0315-162X            Impact factor:   4.666


  9 in total

1.  New population-based reference values for spinal mobility measures based on the 2009-2010 National Health and Nutrition Examination Survey.

Authors:  Shervin Assassi; Michael H Weisman; MinJae Lee; Laurie Savage; Laura Diekman; Tiffany A Graham; Mohammad H Rahbar; Joan I Schall; Lianne S Gensler; Atul A Deodhar; Daniel O Clegg; Robert A Colbert; John D Reveille
Journal:  Arthritis Rheumatol       Date:  2014-09       Impact factor: 10.995

2.  Description of the registry of patients with ankylosing spondylitis in Turkey: TRASD-IP.

Authors:  Hatice Bodur; Sebnem Ataman; Derya Soy Buğdaycı; Aylin Rezvani; Kemal Nas; Kaan Uzunca; Emel Emlakçıoğlu; Altınay Göksel Karatepe; Bekir Durmuş; Melek Sezgin; Figen Ayhan; Pelin Yazgan; Tuncay Duruöz; Mahmut Yener; Alev Gürgan; Mehmet Kırnap; Engin Cakar; Lale Altan; Raikan Soydemir; Erhan Capkın; Ibrahim Tekeoğlu; Gülümser Aydın; Zafer Günendi; Barış Nacır; Ali Sallı; Cihat Oztürk; Asuman Memiş; Yasemin Turan; Erkan Kozanoğlu; Konçuy Sivrioğlu
Journal:  Rheumatol Int       Date:  2010-08-14       Impact factor: 2.631

3.  Reliability and validity analysis of the Chinese version of Evaluation of Ankylosing Spondylitis Quality of Life (EASi-QoL).

Authors:  Ling Ma; Yan Liang; Xin Guo; Ying Wang; Qi-Bing Xie
Journal:  Clin Rheumatol       Date:  2022-03-31       Impact factor: 3.650

Review 4.  There's more to life than everyday function: the challenge of measuring social role participation in ankylosing spondylitis.

Authors:  Aileen M Davis; Rosalind Wong; Elizabeth M Badley; Monique A Gignac
Journal:  Nat Clin Pract Rheumatol       Date:  2009-01

5.  Both structural damage and inflammation of the lumbar spine contribute to the sagittal imbalance in ankylosing spondylitis patients with thoracolumbar kyphosis.

Authors:  Song Li; Chang-Zhi Du; Sai-Hu Mao; Ben-Long Shi; Ze-Zhang Zhu; Yong Qiu
Journal:  Quant Imaging Med Surg       Date:  2021-01

6.  Construct validity and responsiveness of the simplified version of Ankylosing Spondylitis Disease Activity Score (SASDAS) for the evaluation of disease activity in axial spondyloarthritis.

Authors:  Fausto Salaffi; Alessandro Ciapetti; Marina Carotti; Stefania Gasparini; Gustavo Citera; Marwin Gutierrez
Journal:  Health Qual Life Outcomes       Date:  2014-08-22       Impact factor: 3.186

Review 7.  Outcome selection for tissue-agnostic drug trials for immune-mediated inflammatory diseases: a systematic review of core outcome sets and regulatory guidance.

Authors:  Olalekan Lee Aiyegbusi; Lavinia Ferrante di Ruffano; Ameeta Retzer; Philip N Newsome; Christopher D Buckley; Melanie J Calvert
Journal:  Trials       Date:  2022-01-15       Impact factor: 2.279

8.  A delphi procedure on rehabilitation outcome for patients with moderate to severe traumatic brain injury; first phase of the Neurotraumatology Quality Registry (NET-QURE).

Authors:  Lianne D Peppel; Majanka H Heijenbrok-Kal; Thomas A Van Essen; Godard C W De Ruiter; Wilco C Peul; Gerard M Ribbers
Journal:  J Rehabil Med       Date:  2022-01-11       Impact factor: 2.912

9.  The relationship between demographic- and disease-related variables and health-related quality of life in patients with axial spondyloarthritis.

Authors:  Gudrun Rohde; Kari Hansen Berg; Anne Prøven; Glenn Haugeberg
Journal:  BMC Musculoskelet Disord       Date:  2017-08-01       Impact factor: 2.362

  9 in total

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