The National Spina Bifida Patient Registry: A Decade's journey
Sign Up to like & getrecommendations! Published in 2018 at "Birth Defects Research"
DOI: 10.1002/bdr2.1407
Abstract: The National Spina Bifida Patient Registry (NSBPR) was established in 2008, as a partnership between the CDC and spina bifida (SB) clinics throughout the United States. The purpose of this study is to explore the… read more here.
Keywords: patient registry; national spina; spina; spina bifida ... See more keywords
Interoperability of population-based patient registries
Sign Up to like & getrecommendations! Published in 2020 at "Journal of Biomedical Informatics"
DOI: 10.1016/j.yjbinx.2020.100074
Abstract: Abstract Enabling full interoperability within and between population-based patient- registry domains would open up access to a rich and unique source of health data for secondary data usage. Previous attempts to tackle patient-registry interoperability have… read more here.
Keywords: based patient; population based; patient registry; interoperability ... See more keywords
Validity of Antineoplastic Procedure Codes in the Danish National Patient Registry
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DOI: 10.1097/ede.0000000000001208
Abstract: Supplemental Digital Content is available in the text. Background: Procedure codes in the Danish National Patient Registry are used for administrative purposes and are a potentially valuable resource for epidemiologic research. To our knowledge, the… read more here.
Keywords: patient registry; danish national; procedure codes; national patient ... See more keywords
Cystic Fibrosis Screen Positive, Inconclusive Diagnosis Genotypes in People with Cystic Fibrosis from the U.S. Patient Registry.
Sign Up to like & getrecommendations! Published in 2022 at "Annals of the American Thoracic Society"
DOI: 10.1513/annalsats.202201-024oc
Abstract: RATIONALE Variants within the cystic fibrosis transmembrane conductance regulator gene (CFTR) that are of unknown significance or are categorized as non CF-causing may be observed in persons with CF. These variants are frequently detected in… read more here.
Keywords: screen; patient registry; diagnosis; fibrosis ... See more keywords
Validity of Inflammatory Bowel Disease Diagnoses in the Danish National Patient Registry: A Population-Based Study from the North Denmark Region
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DOI: 10.2147/clep.s378003
Abstract: Purpose The Danish National Patient Registry (DNPR) is recognized for providing high-quality data. However, only a few minor studies have validated inflammatory bowel disease (IBD) diagnoses in the DNPR, reporting various degrees of validity. To… read more here.
Keywords: national patient; ibd; patient registry; inflammatory bowel ... See more keywords
Usability of Iranian Primary Vitiligo Patient Registry (IPVPR): A Pilot Study
Sign Up to like & getrecommendations! Published in 2022 at "Studies in health technology and informatics"
DOI: 10.3233/shti220993
Abstract: BACKGROUND Usability is essential for the acceptance and success of vitiligo patient registry system. Poor usability could decrease system efficiency and effectiveness, and have a negative impact on using the system and providing services. This… read more here.
Keywords: system; patient registry; usability; study ... See more keywords