The dearth of reliable survival statistics from developing countries was very evident until the mid-1990s. This prompted the International Agency for Research on Cancer (IARC) to undertake a project that facilitated hands-on-training and thereby transfer of knowledge and technology on cancer survival analysis to a majority of researchers from the participating population-based cancer registries...

BACKGROUND Clinical registries capture patient information contingent upon successful recruitment and retention of patients who will consent to participation. To accomplish this requires the elements that affect patient recruitment. For example, failure to adequately engage physicians or other healthcare professionals can have as much impact on recruitment success as failure to adequately ident...

Metadata itself is often called 'data about data', information that typically describes what a document is, what it is about, and where one may locate it (Zeng & Jin, 2008). There are various metadata standards, such as Dublin Core and IEEE LOM. Each standard contains an element set or scheme that defines the structure and semantics of elements, such as the DC Metadata Element Set, now referred...

BACKGROUND The availability of quality assured, population-based cancer registries and biobanks with high quality samples makes it possible to conduct research on large samples sets with long follow-up within a reasonable time frame. Defined quality for both cancer registries and biobanks is essential for enabling high quality biobank-based research. Recent networking projects have brought thes...

Iron deficiency without anemia and iron deficiency anemia are common and frequently overlooked complications of inflammatory bowel disease. Despite the frequency and impact of iron deficiency in inflammatory bowel disease, there are gaps in our understanding about its incidence, prevalence and natural history and, consequently, patients may be undertreated. Medical registries have a key role in...

Background and purpose - The number of shoulder registries increases. We assessed international trends in use of shoulder arthroplasty, and described the current state of procedure selection and outcome presentation as documented in national and regional joint registries. Methods - Published reports from 9 population-based shoulder arthroplasty registries (country/region: Norway, Sweden, New Ze...