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To learn more about Rick Willoughby, view his Paladin Registry research report.
Thus, we agreed to set up a registry research board with the task of assessing governmental aspects not usually covered by ethics boards, such as avoidance of parallel research on the same data.
It is readily applicable in registry research and we used ICD-10 codes (International Classification of Diseases version 10) for score estimation [ 10] from hospitalizations one year prior to surgery (including surgery hospitalization).
The potential of Nordic registry research is formidable, as these countries have national health data sources and the possibility to combine data in a way not possible in other countries (Table 6).
Under Danish law, only investigations which include human biological material must be reported to and approved by the Danish National Committee on Biomedical Research Ethics; this does not apply to questionnaire surveys, interview studies, and registry research surveys.
Based on these and many other limitations, it appears to be mandatory that scientists, scientific journals, and international associations devoted to registry-based research should define how registry research should be presented, building on existing guidelines and protocols (von Elm et al. 2007, Ranstam et al. 2011).
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Investigators in participating regional cancer registries, research centres and hospital trusts are listed below.
Survival estimates were made using the SEER 13 registries research file for 1992 2009 (SEER, 2011a).
Relative survival rates were estimated from the SEER 17-registries research data set using SEER*Stat v. 7.0.4.
The SEER 17 registries research data set comprised 3100 cases of PCNSL diagnosed between 2000 and 2008 (Table 1).
Country teams stated that most of the essential information for decision-making was available with various MOH departments, national registries, research studies, and international reports.
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