The aim of the project is to set up a network of Italian and other European Centres dealing with patients affected by RBDs in order to implement the already existing RBDD database (www.rbdd.org). The main partner, at present the only Italian participating centre, involved other European Centres in the testing phase of the database meant to optimize its on-line functions, verifying the proper setting of the help, controls on guided choices, clarity of field-browsing, simplicity of interrogation tools. Partners were able to access the database through activation of an account and a protected certification. After an initial data input, partners cited anomalies, logical, browsing and comprehension errors, possible improvements or modification proposals. The changes considered fundamental for the correct working of the database will be made, but only after an agreement has been reached within the network. Moreover, Associazione Italiana Centri Emofilia (AICE), a reliable association regarding treatment Centre coordination and patients assistance in the field of hemophilia, was involved to create an Italian National Registry on RBDs, similar to that created by us at European level. This collaboration was aimed to link the information on RBDs patients inserted in the Emocard, the AICE computer-based clinical data collection system, with those inserted in the European and RBDD databases. To understand whether the two databases could communicate and collect data homogenously, a comparison of the respective fields was carried out, showing that the two databases are similar, because the majority of information requested by RBDD are already contained in Emocard. However, few important fields (e.g. parents’ consanguinity, antigen level, bleeding score) present in the RBDD questionnaire are not foreseen in Emocard. To uniform the two data collection forms, additional pages will be added to the Emocard questionnaire. Emocard information on RBDs patients will be periodically extracted and sent to Flora Pevyandi, responsible of the European project, who will try to improve the harmonization of data collection, analysis and extraction of those data which will be necessary to draw therapeutic guidelines. This will lead us to avoid duplication of data insertion. In conclusion, it is desirable that within next year, all Italian Centres affiliated to AICE will adhere to this project with the aim of creating a National Registry, not yet available. Data collected in the Italian cohort will implement the already large European cohort, thus allowing to draw adequate statistical analysis, useful to clinical practice, by organization of therapeutic guidelines

Establishment of a European network of Rare Bleeding Disorders (RBDs) / F. Peyvandi, M. Spreafico, M. Menegatti, R. Palla, A. Rocino, A. Iorio, P.M. Mannucci. ((Intervento presentato al convegno Workshop : projects on rare diseases funded within the bilateral agreement Italy (ISS) and USA (NIH)on joint research and development of public health actions tenutosi a Roma nel 2008.

Establishment of a European network of Rare Bleeding Disorders (RBDs)

F. Peyvandi
Primo
;
M. Spreafico
Secondo
;
M. Menegatti;R. Palla;P.M. Mannucci
Ultimo
2008

Abstract

The aim of the project is to set up a network of Italian and other European Centres dealing with patients affected by RBDs in order to implement the already existing RBDD database (www.rbdd.org). The main partner, at present the only Italian participating centre, involved other European Centres in the testing phase of the database meant to optimize its on-line functions, verifying the proper setting of the help, controls on guided choices, clarity of field-browsing, simplicity of interrogation tools. Partners were able to access the database through activation of an account and a protected certification. After an initial data input, partners cited anomalies, logical, browsing and comprehension errors, possible improvements or modification proposals. The changes considered fundamental for the correct working of the database will be made, but only after an agreement has been reached within the network. Moreover, Associazione Italiana Centri Emofilia (AICE), a reliable association regarding treatment Centre coordination and patients assistance in the field of hemophilia, was involved to create an Italian National Registry on RBDs, similar to that created by us at European level. This collaboration was aimed to link the information on RBDs patients inserted in the Emocard, the AICE computer-based clinical data collection system, with those inserted in the European and RBDD databases. To understand whether the two databases could communicate and collect data homogenously, a comparison of the respective fields was carried out, showing that the two databases are similar, because the majority of information requested by RBDD are already contained in Emocard. However, few important fields (e.g. parents’ consanguinity, antigen level, bleeding score) present in the RBDD questionnaire are not foreseen in Emocard. To uniform the two data collection forms, additional pages will be added to the Emocard questionnaire. Emocard information on RBDs patients will be periodically extracted and sent to Flora Pevyandi, responsible of the European project, who will try to improve the harmonization of data collection, analysis and extraction of those data which will be necessary to draw therapeutic guidelines. This will lead us to avoid duplication of data insertion. In conclusion, it is desirable that within next year, all Italian Centres affiliated to AICE will adhere to this project with the aim of creating a National Registry, not yet available. Data collected in the Italian cohort will implement the already large European cohort, thus allowing to draw adequate statistical analysis, useful to clinical practice, by organization of therapeutic guidelines
ott-2008
Settore MED/09 - Medicina Interna
Istituto Superiore di Sanità
Establishment of a European network of Rare Bleeding Disorders (RBDs) / F. Peyvandi, M. Spreafico, M. Menegatti, R. Palla, A. Rocino, A. Iorio, P.M. Mannucci. ((Intervento presentato al convegno Workshop : projects on rare diseases funded within the bilateral agreement Italy (ISS) and USA (NIH)on joint research and development of public health actions tenutosi a Roma nel 2008.
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