A registry is a list of information recorded by a trusted authority. Registries have security requirements for data integrity and availability, and for the ability to connect with other registries. Building registries on a blockchain leverages key properties of blockchains, including data integrity, immutability, and availability. By using a blockchain as uniform infrastructure, different regis...

Widespread adoption of electronic health records (EHRs) and expansion of patient registries present opportunities to improve patient care and population health and advance translational research. However, optimal integration of patient registries with EHR functions and aggregation of regional registries to support national or global analyses will require the use of standards. Currently, there a...

Service discovery is a fundamental concept underpinning the move towards dynamic service-oriented business partnerships. The business process for integrating service discovery and underlying registry technologies into business relationships, procurement and project management functions has not been examined and hence existing Web Service registries lack capabilities required by business today. ...

The following on Barrett's esophagus registries contains commentaries on the data sets to be included, organizational issues, and the demographic, lifestyle, and diagnostic differences between the United States and Europe. The importance of collaborative studies is also discussed.

Cancer registries have proven valuable with respect to validating therapeutic safety and drug efficacy, uncovering real-world implementation practices, and their evolution over time. Modern cancer therapeutics are approved as single agents oftentimes compared to the least active approved standard agent in randomized trials. However, the burgeoning diversity and number of drugs introduces a comp...

From the 1University of Calgary, Calgary, Alberta; 2Western University – London Health Sciences Centre, London, Ontario; 3University of Calgary Department of Community Health Sciences, Calgary, Alberta; 4Parkinson Society of Canada, Toronto, Ontario; 5McGill University, Montreal, Quebec; 6University of Manitoba, Winnipeg, Manitoba; 7Institute of Public Health, University of Calgary, Calgary, Al...

BACKGROUND With the proliferation of rare disease registries, there is a need for registries to undergo an assessment of their quality against agreed standards to ensure their long-term sustainability and acceptability.This study was performed to evaluate the I-DSD and I-CAH Registries and identify their strengths and weaknesses. METHODS The design and operational aspects of the registries we...

BACKGROUND It is well known that information about clinical trials is not easily accessible by the public. In Japan, clinical trial information can be accessed by the general public through online registries; however, many people find these registries difficult to use. To improve current clinical trial registries, we propose that combining them with clinical information phrased in lay terms wou...

OBJECTIVE This survey set out to describe patient registries available in the country, to determine their security features, data confidentiality, extent of outputs produced and data quality of the registries. METHODS A cross sectional survey was carried out via a self administered questionnaire. RESULTS There were 21 patient registries which covered important chronic diseases in health. Th...