Before these two studies the published data on penile implant surgery consisted mostly of single-surgeon small series and retrospective experiences, rather than prospective, large, multicenter data collection [3-7]. Accordingly, it has been advocated the creation of prospective databases i.e. clinical data registries also to monitor more accurately the results of surgery, and to have solid grou...

Federating metadata registries introduces a range of problems to address, from identifying the commonality in data models across registries, to agreeing on a well-defined data dictionary. As more and more registries participate in the federation, the number of problems to solve can potentially rise to unmanageable levels. While solutions to these issues are researched, generic federation system...

The risk of major malformations in the offspring of mothers with epilepsy receiving antiepileptic drugs is 4--8% compared to 2--4% in the general population. Risk factors include daily dose and polytherapy. Selected drugs have been found to be associated with a higher risk of specific malformations (congenital heart defects and cleft palate with phenytoin and barbiturates; neural tube defects w...

BACKGROUND The ability to generate registries of patients with particular clinical attributes, such as diagnoses or medications taken, is central to measuring and improving the quality of health care. However, it is not known how many providers have the ability to generate such registries. OBJECTIVES To assess the proportion of physician practices that can construct registries of patients wit...

UNLABELLED Cancer registries must provide complete and reliable incidence information with the shortest possible delay for use in studies such as comparability, clustering, cancer in the elderly and adequacy of cancer surveillance. Methods of varying complexity are available to registries for monitoring completeness and timeliness. We wished to know which methods are currently in use among canc...

Patient registries are an essential tool to increase current knowledge regarding rare diseases. Understanding these data is a vital step to improve patient treatments and to create the most adequate tools for personalized medicine. However, the growing number of disease-specific patient registries brings also new technical challenges. Usually, these systems are developed as closed data silos, w...

Orphan drugs are often approved under exceptional circumstances, requiring submission of additional data on safety and effectiveness through registries. These registries are mainly focused on one drug only and data is frequently incomplete. Some registries also address phenotypic heterogeneity and natural history data and publications on these aspects have contributed to the knowledge and aware...