The RUDY study platform – a novel approach to patient driven research in rare musculoskeletal diseases

The RUDY study platform – a novel approach to patient driven research in rare musculoskeletal diseases

Abstract Background Research into rare diseases is becoming more common, with recognition of the significant diagnostic and therapeutic care gaps. Registries are considered a key research methodology to address rare diseases. This report describes the structure of the Rare UK Diseases Study (RUDY) p...

詳細記述

書誌詳細
主要な著者: M. K. Javaid, L. Forestier-Zhang, L. Watts, A. Turner, C. Ponte, H. Teare, D. Gray, N. Gray, R. Popert, J. Hogg, J. Barrett, R. Pinedo-Villanueva, C. Cooper, R. Eastell, N. Bishop, R. Luqmani, P. Wordsworth, J. Kaye
フォーマット: 論文
言語:English
出版事項: BMC 2016-11-01
シリーズ:Orphanet Journal of Rare Diseases
主題:
Rare diseases
Database management systems
Dynamic consent
Patient reported outcome measures
オンライン･アクセス:http://link.springer.com/article/10.1186/s13023-016-0528-6

インターネット

http://link.springer.com/article/10.1186/s13023-016-0528-6

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