CERTAIN registry: A European-wide research platform for pediatric kidney transplantation

被引：3

作者：

Tönshoff B. ^{[1
]}

Krupka K. ^{[1
,2
]}

Köster L. ^{[1
,2
]}

Fichtner A. ^{[1
]}

Pape L. ^{[3
]}

Höcker B. ^{[1
]}

机构：

[1] Klinik Kinderheilkunde I, Zentrum für Kinder- und Jugendmedizin, Universitätsklinikum Heidelberg, Im Neuenheimer Feld 430, Heidelberg

[2] Insitut für Medizinische Biometrie und Informatik, Universitätsklinikum Heidelberg, Heidelberg

[3] Zentrum für Kinderheilkunde und Jugendmedizin, Medizinische Hochschule Hannover, Hannover

来源：

Der Nephrologe | 2015年 / 10卷 / 6期

关键词：

Data protection; Medical research network; Pediatric renal transplantation; Rare diseases; Registries;

D O I：

10.1007/s11560-015-0004-7

中图分类号：

学科分类号：

摘要：

The clinical and epidemiological research of rare diseases is made difficult by the very small numbers of cases. A comprehensive collection of data and information in registries is an essential prerequisite to improve this situation. To this end the research group “Renal Transplantation in Children and Adolescents” was therefore authorized by the German Society for Pediatric Nephrology (GPN) to develop the CERTAIN registry (Cooperative European Pediatric Renal Transplant Initiative, www.certain-registry.eu). The registry has been established to enable scientific analyses and quality assurance in the field of pediatric renal transplantation with statistically valid numbers of patients. Bidirectional data interfaces from the registry have been established to already existing database systems, such as Eurotransplant and the Collaborative Transplant Study (CTS) in order to avoid redundant data entries and to improve data quality. All relevant functions of the registry can be easily accessed without any extra configuration or software installation via the CERTAIN web application. The registry fulfills all regulatory and ethical requirements regarding patient data privacy and security according to the recommendations of the German technology, methods and infrastructure for networked medical research organization (TMF). Because of its comprehensive and flexible data collation the CERTAIN registry allows a precise characterization of specific patient cohorts and has thereby become an important tool for up to date clinical research in this field. Because of its international orientation the CERTAIN registry has meanwhile advanced to a network for pediatric renal transplantation of the European Society for Pediatric Nephrology (ESPN), where it serves as a multinational platform for cooperative research in this field. © 2015, Springer-Verlag Berlin Heidelberg.

引用

页码：480 / 487

页数：7

共 11 条

[1]

Billing H., Burmeister G., Plotnicki L., Et al., Longitudinal growth on an everolimus- versus an MMF-based steroid-free immunosuppressive regimen in paediatric renal transplant recipients, Transpl Int, 26, pp. 903-909, (2013)

[2]

Brunkhorst L., Fichtner A., Hocker B., Four Year Efficacy and Safety of an Everolimus-based vs. a Mycophenolate Mofetil-based Regimen in Pediatric Renal Transplant Recipients, PLOS ONE (im Druck), (2015)

[3]

Hocker B., Zencke S., Krupka K., Cytomegalovirus Infection in Pediatric Renal Transplantation and the Impact of Chemoprophylaxis with, (2015)

[4]

Koster L., Krupka K., Hocker B., Et al., ntegrating data from multiple sources for data completeness in a web-based registry for pediatric renal transplantation – the CERTAIN Registry. MEDINFO 2015, Stud Health Technol Inform, 216, (2015)

[5]

McDonald S.P., Craig J.C., Long-term survival of children with end-stage renal disease, N Engl J Med, 350, pp. 2654-2662, (2004)

[6]

Plotnicki L., Kohl C.D., Hocker B., Et al., The CERTAIN Registry: a novel, web-based registry and research platform for pediatric renal transplantation in Europe, Transpl Proc, 45, pp. 1414-1417, (2013)

[7]

Pommerening K., Reng M., Secondary use of the EHR via pseudonymisation, Stud Health Technol Inform, 103, pp. 441-446, (2004)

[8]

Reng C.-M., Et al., Generische Lösungen zum Datenschutz für die Forschungsnetze in der Medizin: Im Auftrag des Koordinierungsrates der Telematikplattform für Medizinische For-schungsnetze, (2006)

[9]

Smits J.M., Niesing J., Breidenbach T., Collett D., The making of a pan-European organ transplant registry, Transpl Int, 26, 3, pp. 307-314, (2013)

[10]

Tonshoff B., Plotnicki L., Feneberg R., Et al., Etablierung eines webbasierten Registers für die pädiatrische Nierentransplantation: das CERTAIN Register, Nieren Hochdruckkrankh, 40, pp. 320-326, (2011)

← 1 2 →