Dataset Information

Design and development of an international clinical data exchange system: the international layer function of the Dolphin Project.

ABSTRACT:

Objective

At present, most clinical data are exchanged between organizations within a regional system. However, people traveling abroad may need to visit a hospital, which would make international exchange of clinical data very useful.

Background

Since 2007, a collaborative effort to achieve clinical data sharing has been carried out at Zhejiang University in China and Kyoto University and Miyazaki University in Japan; each is running a regional clinical information center. Methods An international layer system named Global Dolphin was constructed with several key services, sharing patients' health information between countries using a medical markup language (MML). The system was piloted with 39 test patients.

Results

The three regions above have records for 966,000 unique patients, which are available through Global Dolphin. Data exchanged successfully from Japan to China for the 39 study patients include 1001 MML files and 152 images. The MML files contained 197 free text-type paragraphs that needed human translation. Discussion The pilot test in Global Dolphin demonstrates that patient information can be shared across countries through international health data exchange. To achieve cross-border sharing of clinical data, some key issues had to be addressed: establishment of a super directory service across countries; data transformation; and unique one-language translation. Privacy protection was also taken into account. The system is now ready for live use.

Conclusion

The project demonstrates a means of achieving worldwide accessibility of medical data, by which the integrity and continuity of patients' health information can be maintained.

SUBMITTER: Li JS

PROVIDER: S-EPMC3168307 | biostudies-literature | 2011 Sep-Oct

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Design and development of an international clinical data exchange system: the international layer function of the Dolphin Project.

Li Jing-song JS Zhou Tian-shu TS Chu Jian J Araki Kenji K Yoshihara Hiroyuki H

Journal of the American Medical Informatics Association : JAMIA 20110512 5

<h4>Objective</h4>At present, most clinical data are exchanged between organizations within a regional system. However, people traveling abroad may need to visit a hospital, which would make international exchange of clinical data very useful.<h4>Background</h4>Since 2007, a collaborative effort to achieve clinical data sharing has been carried out at Zhejiang University in China and Kyoto University and Miyazaki University in Japan; each is running a regional clinical information center. Method ...[more]

PMID: 21571747

Similar Datasets

Project description:BackgroundThe small sample sizes available within many very preterm (VPT) longitudinal birth cohort studies mean that it is often necessary to combine and harmonise data from individual studies to increase statistical power, especially for studying rare outcomes. Curating and mapping data is a vital first step in the process of data harmonisation. To facilitate data mapping and harmonisation across VPT birth cohort studies, we developed a custom classification system as part of the Research on European Children and Adults born Preterm (RECAP Preterm) project in order to increase the scope and generalisability of research and the evaluation of outcomes across the lifespan for individuals born VPT.MethodsThe multidisciplinary consortium of expert clinicians and researchers who made up the RECAP Preterm project participated in a four-phase consultation process via email questionnaire to develop a topic-specific classification system. Descriptive analyses were calculated after each questionnaire round to provide pre- and post- ratings to assess levels of agreement with the classification system as it developed. Amendments and refinements were made to the classification system after each round.ResultsExpert input from 23 clinicians and researchers from the RECAP Preterm project aided development of the classification system's topic content, refining it from 10 modules, 48 themes and 197 domains to 14 modules, 93 themes and 345 domains. Supplementary classifications for target, source, mode and instrument were also developed to capture additional variable-level information. Over 22,000 individual data variables relating to VPT birth outcomes have been mapped to the classification system to date to facilitate data harmonisation. This will continue to increase as retrospective data items are mapped and harmonised variables are created.ConclusionsThis bespoke preterm birth classification system is a fundamental component of the RECAP Preterm project's web-based interactive platform. It is freely available for use worldwide by those interested in research into the long term impact of VPT birth. It can also be used to inform the development of future cohort studies.

Project description:BackgroundNon-Hodgkin lymphoma (NHL), the most common hematologic malignancy, consists of numerous subtypes. The etiology of NHL is incompletely understood, and increasing evidence suggests that risk factors may vary by NHL subtype. However, small numbers of cases have made investigation of subtype-specific risks challenging. The International Lymphoma Epidemiology Consortium therefore undertook the NHL Subtypes Project, an international collaborative effort to investigate the etiologies of NHL subtypes. This article describes in detail the project rationale and design.MethodsWe pooled individual-level data from 20 case-control studies (17471 NHL cases, 23096 controls) from North America, Europe, and Australia. Centralized data harmonization and analysis ensured standardized definitions and approaches, with rigorous quality control.ResultsThe pooled study population included 11 specified NHL subtypes with more than 100 cases: diffuse large B-cell lymphoma (N = 4667), follicular lymphoma (N = 3530), chronic lymphocytic leukemia/small lymphocytic lymphoma (N = 2440), marginal zone lymphoma (N = 1052), peripheral T-cell lymphoma (N = 584), mantle cell lymphoma (N = 557), lymphoplasmacytic lymphoma/Waldenström macroglobulinemia (N = 374), mycosis fungoides/Sézary syndrome (N = 324), Burkitt/Burkitt-like lymphoma/leukemia (N = 295), hairy cell leukemia (N = 154), and acute lymphoblastic leukemia/lymphoma (N = 152). Associations with medical history, family history, lifestyle factors, and occupation for each of these 11 subtypes are presented in separate articles in this issue, with a final article quantitatively comparing risk factor patterns among subtypes.ConclusionsThe International Lymphoma Epidemiology Consortium NHL Subtypes Project provides the largest and most comprehensive investigation of potential risk factors for a broad range of common and rare NHL subtypes to date. The analyses contribute to our understanding of the multifactorial nature of NHL subtype etiologies, motivate hypothesis-driven prospective investigations, provide clues for prevention, and exemplify the benefits of international consortial collaboration in cancer epidemiology.

Dataset Information

Design and development of an international clinical data exchange system: the international layer function of the Dolphin Project.

Objective

Background

Results

Conclusion

Publications

Design and development of an international clinical data exchange system: the international layer function of the Dolphin Project.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets