an initiative of the international rare diseases research consortium-irdirc spanish rare diseases...
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SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC PILOT STUDY. DATABASE UPLOADING PROCESSTRANSCRIPT
An initiative of the International Rare Diseases Research Consortium-IRDiRC
Spanish Rare Diseases Registries Research Network - SpainRDR
https://spainrdr.isciii.es
PILOT STUDY. UPLOADING DATABASE PROCESS
Ignacio Abaitua. Instituto de Investigación de Enfermedades Raras (IIER) Instituto de Salud Carlos III
SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC
Uploading process
3 different uploading mechanisms
Web ServiceDirectly by the Autonomous Community in the
Registry´s WebDeposit file in the SpainRDR´s Web – (we upload it)
Previously distributed filesXML, XDFAccess
PILOT STUDY. DATABASE UPLOADING PROCESS
SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC
PILOT STUDY. DATABASE UPLOADING PROCESS
SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC
PILOT STUDY. DATABASE UPLOADING PROCESS
SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC
CCAA who answered 15
Completed revision 8Incomplete revision 7
CCAA who have not answered 3
ANSWERS RECEIVED
SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC
Sistematic revision prior to uploading Errors detected
No coincidence between XML and Access
Error in mortality codification
Use of inadequate xml files
Use of multiple xml files by one Autonomous Community
PILOT STUDY. DATABASE UPLOADING PROCESS
SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC
Problems with structure
Problems with field labels
In the name of the labelchanged nameslowercase instead of uppercase or vice versa
Presence of labels that are not in the uploading model
Absence of labels that should be in the uploading model
PILOT STUDYDATABASE UPLOADING
SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC
Problems with content
Variables out of range
Coding errors (countries, etc.)
Variable gaps
Incorrect formats (dates, etc.)
PILOT STUDY. DATABASE UPLOADING
SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC
PILOT STUDY. DATABASE UPLOADING
SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC
Interactive revision processCCAA
Production of datafile
IIERDatafile
reception
Transfer
Error checkingCorrection of errors
Commentaries
Datafile loadingNew transfer
PILOT STUDY. DATABASE UPLOADING
SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC
PILOT STUDY. DATABASE LOADING
Datafile uploading
uploading times
SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC
PILOT STUDY. LOADING DATABASE
Datafile uploading
File for reporting errors to the Autonomous Communities (CCAAs)
SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC
PILOT STUDY. LOAD DATABASE
SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC
CCAA who answered 15
Completed revision 8Incomplete revision 7
CCAA who have not answered 3
ANSWERS RECEIVED
SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC
CCAA 8
Number of cases 567.405
Population represented 23.392.574
% relative to national population 50,72
Estimated cases in Spain 1.118.598
Answers receivedCompleted revision
SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC
Limitations.
• List with potential problems of errors in classification(codification system)
• List of codes is limited
• Access to information sources
• Objectives of the pilot study
ANSWERS RECEIVEDCompleted revision
SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC
First pilot study shows strengths and weaknesses in the use of a common platform for a population-based registry of rare diseases
Problems to solveparticipation of all the Communities (CCAAs)improve the standardization of uploading process
Pending evaluationsources of informationlist of diseasesdetailed statistical analysis
Overall positive balanceGeneral effortGood global responseGreat interest and commitment on the part of the CCAAs
CONCLUSIONS
Thank you very much!
SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC