Current diagnosis and management of Crohn’s disease in China: results from a multicenter prospective disease registry
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DOI: 10.1186/s12876-019-1057-2
Abstract: BackgroundThis study aimed to understand the disease characteristics and treatment outcomes of Crohn’s disease (CD) in a real-world setting in China.MethodsIn this prospective, non-interventional, multicenter disease registry, adults (≥18 years) with existing and newly diagnosed CD… read more here.
Keywords: disease registry; disease; perianal disease; study ... See more keywords
Barriers and facilitators for disease registry systems: a mixed-method study
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DOI: 10.1186/s12911-022-01840-7
Abstract: Background A Disease Registry System (DRS) is a system that collects standard data on a specific disease with an organized method for specific purposes in a population. Barriers and facilitators for DRSs are different according… read more here.
Keywords: data quality; barriers facilitators; method; security confidentiality ... See more keywords
Remodeling an existing rare disease registry to be used in regulatory context: Lessons learned and recommendations
Sign Up to like & getrecommendations! Published in 2022 at "Frontiers in Pharmacology"
DOI: 10.3389/fphar.2022.966081
Abstract: Disease registries have been used as an interesting source of real-world data for supporting regulatory decision-making. In fact, drug studies based on registries cover pre-approval investigation, registry randomized clinical trials, and post-authorization studies. This opportunity… read more here.
Keywords: rare disease; disease; remodeling existing; registry ... See more keywords