The 2004 Ministerial Summit on Health Research called on the World Health Organization to to establish a registry network with the intention of providing a single access point to identify trials. In 2007 the International Committee of Medical Journal Editors amended their support of this initiative stating that only trials registered prospectively on a member registry of the WHO's Network of Pr...

PURPOSE Knowledge of the benefits and risks of new drugs is incomplete at the time of marketing approval. Registries offer the possibility for additional, post-approval, data collection. For all new drugs, which were approved in the European Union between 2007 and 2010, we reviewed the frequency, the type, and the reason for requiring a registry. METHODS The European Public Assessment Reports...

Editor’s note—Several pregnancy registries presently are collecting data on pregnancy outcomes in women with epilepsy. Such registries have inherent limitations of selection bias and incomplete information. Data from the registries cannot easily be combined to achieve greater statistical power, since each registry differs from the other in methodology. Nevertheless, in the likely continued abse...

INTRODUCTION Transcatheter aortic valve implantation (TAVI) has been demonstrated to be an alternative treatment for severe aortic stenosis in patients considered as high surgical risk. Since its first human implantation by Cribier et al., TAVI has been shown to increase survival rate and quality of life for high surgical risks patients. The objective of this study is to provide an overview of ...

The Global Registry of Biodiversity Repositories is an online metadata resource for biodiversity collections, the institutions that contain them, and associated staff members. The registry provides contact and address information, characteristics of the institutions and collections using controlled vocabularies and free-text descripitons, links to related websites, unique identifiers for each i...

INTRODUCTION In 2004, the Midwives Alliance of North America's (MANA's) Division of Research developed a Web-based data collection system to gather information on the practices and outcomes associated with midwife-led births in the United States. This system, called the MANA Statistics Project (MANA Stats), grew out of a widely acknowledged need for more reliable data on outcomes by intended pl...

The need to optimize the use of all the information that modern technological tools have made available to the physician ENT/audiologist has increasingly emerged within the Italian scientific community. Towards this purpose, it is necessary to create a registry of the patients using cochlear implants (CIs). This registry will include a homogeneous summary of the information deriving from multip...

BACKGROUND The information concerning the currently existing healthcare registries in our country is not readily accessible, is scarce and some are not well-known, possibly being underused in comparison to their many potential uses. This study is aimed at evaluating the characteristics of the Spanish Healthcare registries and the utilization thereof, especially in Healthcare technology assessme...

Metadata registries comprising sets of categories to be used in data collections exist in many fields. The purpose of a metadata registry is to facilitate data exchange and interoperability within a domain, and registries often contain definitions and examples. In this paper we will argue that in order to ensure completeness, consistency, user-friendliness and extensibility, metadata registries...