Integrating data from multiple sources for data completeness in a web-based registry for pediatric renal transplantation--the CERTAIN Registry.
Patient registries are a useful tool to measure outcomes and compare the effectiveness of therapies in a specific patient population. High data quality and completeness are therefore advantageous for registry analysis. Data integration from multiple sources may increase completeness of the data. The pediatric renal transplantation registry CERTAIN identified Eurotransplant (ET) and the Collaborative Transplant Study (CTS) as possible partners for data exchange. Import and export interfaces with CTS and ET were implemented. All parties reached their projected goals and benefit from the exchange.
Institute of Medical Biometry and Informatics, University Hospital of Heidelberg, Germany.
Lennart
L
Köster
Department of Pediatrics I, University Children's Hospital, Heidelberg, Germany.
Kai
K
Krupka
Department of Pediatrics I, University Children's Hospital, Heidelberg, Germany.
Britta
B
Höcker
Stichting Eurotransplant International Foundation, Leiden, The Netherlands.
Axel
A
Rahmel
Stichting Eurotransplant International Foundation, Leiden, The Netherlands.
Undine
U
Samuel
Stichting Eurotransplant International Foundation, Leiden, The Netherlands.
Wouter
W
Zanen
Department of Transplantation Immunology, University Hospital of Heidelberg, Germany.
Gerhard
G
Opelz
Department of Transplantation Immunology, University Hospital of Heidelberg, Germany.
Caner
C
Süsal
Department of Transplantation Immunology, University Hospital of Heidelberg, Germany.
Bernd
B
Döhler
Department of Pediatrics I, University Children's Hospital, Heidelberg, Germany.
Lukasz
L
Plotnicki
Institute of Medical Biometry and Informatics, University Hospital of Heidelberg, Germany.
Christian D
CD
Kohl
Institute of Medical Biometry and Informatics, University Hospital of Heidelberg, Germany.
Petra
P
Knaup
Department of Pediatrics I, University Children's Hospital, Heidelberg, Germany.
Burkhard
B
Tönshoff
D002675:Child, Preschool; D000068598:Data Accuracy; D003628:Database Management Systems; D057286:Electronic Health Records / Q000458:organization & administration*; D005060:Europe; D005260:Female; D006801:Humans; D007223:Infant; D016247:Information Storage and Retrieval / Q000379:methods; D020407:Internet / Q000458:organization & administration*; D016030:Kidney Transplantation / Q000145:classification / Q000706:statistics & numerical data*; D008297:Male; D062527:Meaningful Use / Q000458:organization & administration; D008498:Medical Record Linkage / Q000379:methods*; D010372:Pediatrics / Q000458:organization & administration*; D012042:Registries; D012984:Software; D014019:Tissue Donors; D066027:Transplant Recipients