Regispt: Registry of Registries In Portugal
نویسندگان
چکیده
منابع مشابه
Respiratory diseases registries in the national registry of rare diseases.
This report describes the general characteristics, objectives and organizational aspects of the registries of rare respiratory diseases included in the National Registry of Rare Diseases of the Research Institute for Rare Diseases (ISCIII), in order to publicize their existence and encourage the participation of professionals. Information is collected on the following conditions: alpha-1 antitr...
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The Korean Society of Nephrology (KSN) end-stage renal disease (ESRD) registry was established in 1985 in which all KSN members are participating voluntarily: the 'Insan Prof. Byung-Suk Min Memorial ESRD Patient Registry'. The ESRD registry committee of KSN has collected the data through the internet online program that was opened in 2001 and revised in 2013. The registry internet program has c...
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INTRODUCTION Pulmonary arterial hypertension (PAH) is a rare disease that must be managed in specialized centers; therefore, the availability of epidemiological national data is critical. METHODS We conducted a prospective, observational, and multicenter registry with a joint collaboration from five centers from Portugal and included adult incident patients with PAH or chronic thromboembolic ...
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Technical Registries are used in digital preservation to enable organizations to maintain definitions of the formats, format properties, software, migration pathways etc. needed to preserve content over the long term. There have been a number of initiatives to produce technical registries leading to the development of, for example, PRONOM, UDFR and the Planets Core Registry. However, these have...
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BACKGROUND The collection of routine clinical data in the setting of research registries can serve an important role in understanding real world care. However, relatively little is known about the patient experience in registries, motivating us to survey patients enrolled in two chronic disease registries. METHODS We conducted similar surveys in two disease-based registries based at one acade...
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ژورنال
عنوان ژورنال: Value in Health
سال: 2015
ISSN: 1098-3015
DOI: 10.1016/j.jval.2015.09.1837