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Carinci F, Štotl I, Cunningham SG, Poljicanin T, Pristas I, Traynor V, Olympios G, Scoutellas V, Azzopardi J, Doggen K, Sandor J, Adany R, Løvaas KF, Jarosz-Chobot P, Polanska J, Pruna S, de Lusignan S, Monesi M, Di Bartolo P, Scheidt-Nave C, C. Heidemann, Zucker I, Maurina A, Lepiksone J, Rossing P, Arffman M, Keskimäki I, Gudbjornsdottir S, Di Iorio CT, Dupont E, De Sabata S, Klazinga N and Massi Benedetti M, Making use of comparable health data to improve quality of care and outcomes in diabetes: the EUBIROD review of diabetes registries and data sources in Europe, Front Clin Diabetes Healthc, 11 Oct 2021.

Di Iorio CT, Carinci F, Oderkirk J, Smith D, Siano M, de Marco DA, de Lusignan S, Hamalainen P, Massi Benedetti M, A novel methodology to assess privacy, data governance and ethics in health information systems: Privacy and Ethics Impact and Performance Assessment in the EU Bridge-Health Project, J Med Ethics, 2020 Mar 27.

Prof.Massi Benedetti addressed the need of a EU Diabetes Register at the IDF Meeting organized under the auspices of the Finnish Presidency, Brussels, 14th November 2019.

According to the Official Report delivered by the IDF as a summary of the meeting "In his speech, Prof Massimo Massi-Benedetti, Coordinator, EUBIROD, focused on the role of diabetes registries in transforming diabetes outcomes. He highlighted the fact that registries have a number of different targets, for example, research, epidemiology, quality of care, and that they also have distinct beneficiaries, e.g. PwDs, policymakers, healthcare decision-makers etc. He reminded the audience that in its Resolution of 14 March 2012 (2011/2911 RSP), the European Parliament had called on the Commission to coordinate, collect, register, monitor and manage comprehensive epidemiological data on diabetes, and economic data on the direct and indirect costs of diabetes prevention and management, but that this had not, to date, taken place. Prof Benedetti outlined some of the main problems and potential solutions for the realisation of diabetes registries. He concluded his presentation by calling for the creation of a European Diabetes Register, coordinated by IDF Europe and interested member organisations, together with members of the EUBIROD network and other interested stakeholders, to be funded by EU sources and to have an EU-supported infrastructure. This initiative was widely supported by the audience and hosting MEPs".

The slides of his presentation are available here.

EUBIROD Coordinators have been invited to present the State of the Art of Diabetes Registers at the IDF Europe Symposium of the Conference of the European Association for the Study of Diabetes (EASD) 2019, to be held in Barcelona, Spain, 16th September 2019.

The program of the meeting is available here.

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Reflections on the use of the BIRO approach were presented in Milan at the EAPM Conference 2018, using recent results from ICHOM and Bridge Health. Slides available here.

The International Consortium of Health Outcomes Measurement (ICHOM) Diabetes Standard Set has been presented at the Council of IDF Europe in Tirana.

Presentation at the meeting is available here.

The International Consortium of Health Outcomes Measurement (ICHOM) has released its Diabetes Standard Set. The set defines outcomes that matter most to adults living with both type 1 and type 2 diabetes, which the ICHOM Diabetes Working Group recommends health care providers measure in order to achieve patient centered and value-based care.

The Standard Set has been produced in collaboration with a Global Working Group Chaired by the EUBIROD Coordinators, Fabrizio Carinci and Massimo Massi Benedetti. The document, using the BIRO Data Standards, provides the network with an opportunity to embed new global standards in the BIRO system.

The standard set is available here.

The EUBIROD Project and the ICHOM Diabetes Standard Set have been presented at the Meeting "Implementing Outcomes Based Healthcare", organized by the European Federation of Pharmaceutical Industries and Associations (EFPIA) in Brussels. Slides available here.

The ethical and epidemiological implications of the EUBIROD project, including deliverables from the Bridge Health Project recently concluded, were presented at the IDF World Conference 2017 in Abu Dhabi, United Arab Emirates.

G.Olympios presented "The implementation of BIRO/EUBIROD in Cyprus as a precursor to the creation of a Diabetes Record" at the 31st Panhellenic Annual Congress of the Greek Study and Education Society for Diabetes Mellitus, Thessaloniki, Greece, 9th November 2017. A video of the presentation is available here.

The EUBIROD Network gathered in Nicosia, Cyprus, for the second meeting of Task 8.2 of the Bridge Health Project.

In this occasion, the new software NeuBIRO has been presented during a targeted session of the BIRO Academy. High level representatives also joined the meeting for a special workshop on privacy evaluation. A dedicated session explored the uptake of PROMs in diabetes registers and updated the revision of the state of the art of diabetes registers undertaken at the first meeting in Rome.

The agenda of the meeting and presentations are available here.

A scientific paper reporting the results of the EUBIROD Project compared to other EU projects has been published in Health Research Policy and Systems: "Is there enough research output of EU projects available to assess and improve health system performance? An attempt to understand and categorise the output of EU projects conducted between 2002 and 2012", by B.Zander and R.Busse. The paper represents the final revision of the earlier report prepared for the EUROREACH project.

The paper in full text is available here.

F.Carinci has presented the EUBIROD project at the Spring Meeting of the Wennberg International Cooperative. A copy of the slides presented in this occasion is available here.

The EUBIROD Network gathered in Rome, Italy, for the first meeting of Task 8.2 of the Bridge Health Project.

In this occasion, specific working groups have been established in the areas of: a) clinical interpretation; b) privacy impact assessment; c) statistics and IT.

The agenda of the meeting and presentations are available here.

The EUBIROD Network gathered at the University of Surrey, Guildford, England, UK for the General Assembly 2015.

In this occasion, a session of the BIRO Academy on the State of Play of Diabetes Registers has been organized, based upon a network survey coordinated by the University of Surrey. Partners also agreed on their internal governance procedures.

The agenda and presentations are available here.

Prof.Massi Benedetti was invited to present at the 3rd Meeting of the CHRODIS Joint Action on "Diabetes: a case study on strengthening health care for people with chronic diseases".

The meeting was hosted by the National Institute of Health in Rome on the 2nd - 3rdJuly 2015. See the Agenda and Presentation here.

EUBIROD participates to Task 8.2 of the EU Bridge Health Project, officially started on 1st May 2015.

The EUBIROD project has been invited to provide suppport for the calculation of the OECD Health Care Quality Indicators (HCQI) Project on "Lower Extremity Amputations in Diabetes". The results of collegial work conducted in collaboration with the OECD, the Italian Ministry of Health, AGENAS and EUBIROD, have been presented at the Second Annual OECD HCCI Meeting in Paris as Room Material.

The internationally acclaimed European Consumer Powerhouse released a benchmarking EU report on Diabetes entitled "EURO Diabetes Index" which cites EUBIROD as a case study in diabetes information towards the construction of the European Diabetes Register.

See page 16 of the report available here.

Prof.Massi Benedetti, on behalf of the EUBIROD network, has been invited to present at the 2014 EU Summit on Chronic Diseases The slides of the presentation, entitled EUBIROD Network: A Shared Evidence-based Diabetes Information System for Europe Prof. M. Massi Benedetti, President, HIRS EU network for Best Information through Regional Outcomes in Diabetes (EUBIROD) are available here.

EUBIROD participated to the European Commission Meeting of the Ad-hoc WG on the potential ERIC on Health Information, Luxembourg.

EUBIROD Network joins the CHRODIS Joint Action.

EUBIROD has been invited to present to the European Commission Meeting of the Ad-hoc WG on the potential ERIC on Health Information, Brussels, Belgium.

EUBIROD has participated to the Conference organized by WHO Europe in Tallinn to Follow Up the signature of the Tallinn Charter after 5 years. The network participated to the International Discussion Panel, whose results have been included in the official report, available here.

EUBIROD was presented by F.Carinci at the Canadian Institute of Health Information, Toronto, Canada. Slides of the presentation entitled "Using health information without buying the data. Analysis of quality of care indicators from diabetes registries of 19 European countries" are available here.

Members of the EUBIROD network from Romania presented the results of the Technology Transfer in a scientific paper. A full text of the paper is available here.

The EUBIROD Network has participated to the Annual Meeting of the PARENT Joint Action.

EUBIROD Network joined the PARENT Joint Action as a participating network.

The EUBIROD project was shortlisted for the European Health Award at the Gastein Health Forum 2009 (3/10-5/10/2012) by a high profile evaluation committee. The project was considered among the best six initiatives "in more than one European country that have contributed in a clear and significant way to meet challenges in public health and to ameliorating disparities in health services provision within Europe".

EUBIROD has been presented at the Cyprus EU Presidency High Level Conference "Healthy Ageing across the Lifecycle" Nicosia, 5 September, 2012. Slides presented by G.Olympios at the Conference are available here

F.Carinci has represented the EUBIROD Network at the meeting of the PARENT Joint Action, discussing the participation of the network to the preparation of a EU volume of guidelines for the establishment of disease registers.

EUBIROD has been invited by the European Commission in Brussels to represent one of the 10 Public Health Success Stories in Europe! Information about the program available here. The booklet released for the Conference is available here. The booklet has been later expanded in a publication available here.

Results of the EUBIROD project were presented at the European Diabetes Leadership Forum, Copenhagen, Denmark. This was a high level Forum with the presence of Kofi Annan, Secretary General of United Nations. A transcript of the speech delivered by F.Carinci, entitled "The EUBIROD project: A Shared Evidence-based Diabetes Information System for Europe" is available here.

The official report "The diabetes epidemics and its impact on Europe", which cites the relevance of EUBIROD and has been produced for the occasion as a collaboration between the OECD, the Danish Diabetes Association and Novo Nordisk, is available here.

EUBIROD has been invited to participate to the Meeting of the EuroREACH project in Tel Aviv to discuss about the case for international data exchange on diabetes using the BIRO system. F.Carinci participated to the meeting held at Maccabi offices in Tel Aviv.

The EUBIROD Final Meeting was held in Larnaca, Cyprus. The meeting concentrated its attention on the presentation of the results of using the BIRO software and the contents of the EUBIROD data report presented here.

F.Carinci has been invited to participate on behalf of the EUBIROD Network to the EUROReach Consortium Meeting, held in Luxembourg on 2-3rd November. EUROReach (www.euroreach.net) was an FP7 project assembling the best approaches to gain access to research databases worldwide.

At the 3rd EUBIROD Annual Meeting, EUBIROD had a guest representative of the Consortium from Un.Tartu, Estonia. The details of the Consortium went to the Coordinators of EUROReach WP2, who conducted an independent review presented at the Luxembourg Meeting.

At the EUROReach meeting, the BIRO technology was presented by R.Busse, co-Director of the Brussels WHO Health Care Observatory and Editor in Chief of Health Policy, as "the best practice example identified after a search of EU projects across the last thirty years". "The BIRO Technology" - according to Busse "shall be now adopted by the European Union as the gold standard for international data exchange, and must be extended to cover other diseases". Results of the WP2 Report are available as a Review and Poster

Partners of the EUBIROD Consortium gathered in Brussels for the 3rd EUBIROD Annual Meeting. The meeting focused in particular on the contents of the EUBIROD report and ways to improve it. Minor focus has been given to planning further activities and dissemination. This meeting prepared the application of the BIRO software on the data sources from all countries agreeing to analyse data for the first field test on real data in 2012.

The EUBIROD partners gathered for the 2nd BIRO Academy Meeting held at Hotel de La Hulpe in Brussels, Belgium. In this occasion, the EU Commissioner for Health, J.Dalli participated to the meeting. Many presentations were made in the occasion of this session of the BIRO Academy, including Prof.John Lachin from George Washington University, Prof. Sarah Wild from University of Edinburgh and Prof.Mc Gilchrist from the University of Dundee.

The European Commission was present with the officer Heidi Tuuli Mattila. The session included a stream focused on global developments, including participants from Tanzania, Barbados, China and Cuba.

The theme of the 3rd Conference organized by the European Public Health Association in Amsterdam, 10th-13th November 2010, was "Integrated Public Health".
Several contributions were presented by the EUBIROD Consortium on the 12th November.
In the framework of the workshop "Making optimal use of individual health records for public health monitoring and research in a privacy respecting manner: current developments and best practices", T.Di Iorio has presented on behalf of the EUBIROD Consortium: "Cross-border flow of health information: is "privacy by design" sufficient to obtain complete and accurate data for public health in Europe? The case of BIRO/EUBIROD diabetes registers.
Further contributions included an oral presentation by F.Carinci: "A European model for the automatic production of standardized performance indicators: the BIRO statistical engine", and a poster led by F.Storms on behalf of the EUBIROD Consortium: "Towards a European Diabetes Information System: twenty years of progress from St.Vincent Declaration to EUDIP, EUCID, BIRO and EUBIROD. Are we getting closer?".

For 26 years, Academy Health's Annual Research Meeting (ARM) has been the premier forum for health services research, where more than 2,300 attendees gather to discuss health policy implications, sharpen research methods, and network with colleagues from around the world. The BIRO/EUBIROD projects list among the few European projects attracting the attention of the premier US Conference in this field. On Tuesday 29th June, under the theme "Quality and Efficiency: Measurement", Fabrizio Carinci has presented on behalf of the EUBIROD Consortium: "A Novel International Framework for Privacy-Enhanced Data Processing, Exchange, and Pooled Analysis of Disease Registers: The European BIRO/EUBIROD Projects"

Representatives of diabetes registers from 20 EU countries delivered for the first time an automatic European Report at a special EUBIROD meeting in Rome, 4-5 June 2010. Main theme of the meeting was "COORDINATED INFORMATION DELIVERY FROM DIABETES REGISTERS TO IMPROVE QUALITY AND OUTCOMES IN EUROPE". The agenda included a policy session with high representatives of the EUBIROD Consortium, the IDF and the Italian Ministry of Health, followed by a series of groundbreaking presentations on the results obtained by EUBIROD partners using the BIRO system. All presentations from this session are available here. During the second day, results were amalgamated and the software was run live, to produce the first draft of the global European Diabetes Report. The successful application of the BIRO system in Rome paves the way for the final deployment of a stable release and the planned production of the first official report by late 2010. Results will be presented at the annual EUBIROD Meeting planned to take place at IDF, Brussels, December 2010.

The abstract "A novel framework for the routine production of EU indicators: the BIRO system" (Carinci, Baglioni, Di Iorio, Rossi, Azzopardi, Beck, Cunningham, Skeie, Olympios, Pruna, Massi Benedetti on behalf of the BIRO Consortium) has been presented as a poster at the European Working Conference on Health Services Research, 8-9th April 2010, The Hague, the Netherlands. A copy of the poster is available here.
The Conference has been an initiative supported by the FP7 programme of the European Commission with the aim of identifying, evaluating and improving the contribution of Health Services Research to the health policy process in Europe. Instead of being a classic "ten-minute paper presentation conference", the agenda provided health services researchers and policy makers with a unique opportunity to discuss and develop high impact research for Europe.

Results of the BIRO project have been presented in an oral session at the IDF World Diabetes Congress 2009, Montreal, Canada. The presentation "A novel standard to support information delivery for the fulfilment of IDF policy in Europe: results of the EU DG SANCO funded BIRO project" (Carinci, Azzopardi, Baglioni, Beck, Cunningham, Skeie, Olympios, Pruna, Traynor, Massi Benedetti on behalf of the BIRO Consortium) is available here.
EUBIROD was presented in a poster discussion on "Monitoring diabetes outcomes across Europe, and beyond: the EU DG SANCO funded EUBIROD project".
The Privacy Impact Assessment was presented in a poster on "Defining the best architecture for safe data exchange of diabetes information in Europe: privacy impact assessment in the BIRO project" by Di Iorio CT et al.

The BIRO project was shortlisted for the European Health Award at the Gastein Health Forum 2009 (30/9-3/10/2009) by a high profile evaluation committee. The project was considered among the best six initiatives "in more than one European country that have contributed in a clear and significant way to meet challenges in public health and to ameliorating disparities in health services provision within Europe".
According to John Bowis, former UK Minister of Health, Member of European Parliament, and a strong global advocate of diabetes policy, BIRO presented a "satisfying technical workflow, which fulfilled data privacy requirements and was successfully run in 40 months".

The First EUBIROD Technical meeting took place in Rome on 19th-20th November 2009. The discussion concerned the following topics: results of data source profile and privacy questionnaires, inclusion of paediatric indicators into the BIRO Common Dataset, extended epidemiological analysis, improvement of the BIRO software through the development of a customized toolbox, joint EUBIROD-DECADE study group.

A press conference was organized at a historical place in the centre of the medieval city of Perugia, to present the BIRO System, the work packages and the final results of the project to clinical experts, health care professionals and local health authorities of Regione Umbria. The BIRO Monograph and other dissemination material were distributed in the occasion.

The following deliverables were finally completed: D11.1 "Web Portal Template " (WP Leader: University of Bergen; public); D7.2 " Reports Template Update and XML Metadata Reports" delivered (WP Leader: University of Bergen; public); D2.2 "Clinical Review Update" delivered (WP Leader: Joanneum Research; public); D5.4 "Privacy Impact Assessment Step 4: Final Report" delivered (WP Leader: University of Perugia; public);

The BIRO System, the work packages and the final results of the project were officially presented to the European Commission (DG Research, SANCO and Public Health Executive Agency). The BIRO Monograph was distributed for the first time at this meeting.

The following deliverables were finally completed: D8.1 "Statistical Engine" (WP Leader: University of Perugia; public); D14.1 "Web Report Base" (WP Leader: University of Perugia; public); D12.1 "Technology Transfer Workshop" (WP Leader: Paulescu Institute; private)

The First EUBIROD Annual Meeting was held 2-4th May 2009 at the Dasman Centre for Research and Treatment of Diabetes, Kuwait City, Kuwait. The three-day Conference took place under the auspices of Dr.Martin Vàvra, Ambassador of the Czech Republic, Chair of the Presidency of the European Union. Participants included the Undersecretary of Health of Kuwait, Ambassadors of European Member States, and over 50 representatives from the 20 countries involved in the EUBIROD project.
The agenda included a Methodological Session run by the BIRO Academy, a faculty of international experts formed through EUBIROD to foster dissemination of diabetes information at the global level. The session involved public lectures on the fundamental principles of data definition, collection and analysis underlying the BIRO methodology. The second day included a Policy Session dedicated to the use of surveillance systems for policy making, introducing a series of case studies with a particular focus on recent developments in the Gulf Area. The final part of the meeting was dedicated to a Training Session on the application of the BIRO system, followed by a discussion on the EUBIROD workplan.

Technical referents of the BIRO partners gathered in Bergen to analyse all unresolved aspects in the development of the software. The BIRO System was debugged while loading different data sources and running its components. Deliverables were analysed to fit with the overall design, particularly data schemas. Different presentations of the results were considered, and the plan for the final delivery of the project agreed among partners.

In the occasion, participants also discussed updates to Common Dataset and Data Dictionary, an e-learning platform and the template for the web portal David Whiting, an epidemiologist in charge of the International Atlas for Diabetes at the International Diabetes Federation (IDF) International Brussels, offered a very interesting presentations on IDF plans in developing countries

Partners of the EUBIROD Collaboration met in Rome to organize the activities of the project according to the revised workplan agreed in the preparatory meeting held in Rome in April 2008.

Partners of the BIRO Project gathered in Brussels for a General Meeting. The occasion allowed to examine the status of all work packages and the stage of development of the software. The work plan was redefined considering a six months extension requested to the Commission.

Part of the software called "BIROBox" was introducted to the Consortium. This is a tool that allows BIRO users to extract and process local data for different analytical purposes. It collects and integrates all technical works done during the project in a single, user friendly software tools. The architecture of BIRO Central Engine was also described to the Consortium. Details were provided regarding techical features of the software.

The clinical review of the indicators to be covered by the BIRO sftware has been updated to include the most recent achievements. New indicators were selected. based on their ability for benchmarking, scientific soundness and feasibility.

EUCID and EUBIROD have joined forces to deliver the Chapter on Diabetes of the EU Report on Major and Chronic Diseases 2007. The full report is available here.

Partners of the BIRO project met in Rome on the 20th April. The Coordinating Centre presented an overview of the complete BIRO architecture was presented. The framerwork can be logically split in two parts: the first relates to software tools run in each region to produce the Local Statistical Report, while the second part refers to the set of software tools used both at the Local and Central Level, both required to produce the Global statistical report.

Partners were presented with practical examples on how to use the data and run the Statistical Engine to produce Statistical objects. Partners also discussed the structure of BIRO web portal. C.T.Di Iorio introduced the content of step 3 of the Privacy Impact Assessment. The methodology has been described in a draft of a targeted scientific paper.

Deliverablle D5.3 "Privacy Impact Assessment Step 3" was finally completed (WP Leader: University of Perugia; public)

Partners of the BIRO project met in Rome. The Coordinating Centre presented an overview of the complete BIRO architecture was presented. The framerwork can be logically split in two parts: the first relates to software tools run in each region to produce the Local Statistical Report, while the second part refers to the set of software tools used both at the Local and Central Level, both required to produce the Global statistical report.

Partners were presented with practical examples on how to use the data and run the Statistical Engine to produce Statistical objects. Partners also discussed the structure of BIRO web portal. C.T.Di Iorio introduced the content of step 3 of the Privacy Impact Assessment. The methodology has been described in a draft of a targeted scientific paper.

Partners of the EUBIROD Collaboration met in Rome to discuss the final workplan of the EUBIROD project.

All partners of the new EUBIROD Consortium met in Rome for the first time to sign the Consortium Agreement.

Partners of the BIRO project gathered in Rome for a productive Consortium meeting. An overview of the workplan for 2008 was presented. The most recent developments at the EU Task Force of Major and Chronic Diseases were also introduced. The Committee was organized by SANCO to ensure rapid communication between projects in the area of Morbidity and Mortality. Both BIRO and EUCID were asked to coordinate the preparation of a Chapter of the Major and Chronic Diseases (MCD) report on diabetes.

The structure of the BIRO prototype was discussed in detail. A first run of both the database and statistical engines was prepared for the occasion using data from Regione Umbria. F.Carinci presented an overview of the different components and technical steps required for the automatic construction of a common statistical report.

V.Baglioni presented the pilot implementation of the BIRO Communication Software. The goal of this module was to send statistical objects from the Local to the Central BIRO System in a secure and reliable way. An overview of the technology chosen to achieve the goal was also provided. The Coordinating Centre presented the new BIRO-EUBIROD brochure and the second BIRO newsletter, focusing on the Malta and Graz meetings.

A stream of BIRO Deliverables has been completed: D4.1 "Data Dictionary" delivered (WP Leader: University of Dundee; public); D4.2 "XML Metadata Dictionary" delivered (WP Leader: University of Dundee; public) D5.2 "Privacy Impact Assessment: Step 2" delivered (WP Leader: University of Perugia; public) D7.1 "Report template" delivered (WP Leader: University of Bergen; public)

BIRO partners met in the city of Larnaca, Cyprus with the generous support of the Cyprus Diabetes Association and the Ministry of Health. The session demonstrated the positive impact of the BIRO collaboration in the local community. Participants included independent evaluators Amanda Adler (Un.Cambridge and Un.Oxford, UK) and Fred Storms (CBO NL), who offered the Consortium their valuable input, presenting their views and making their suggestions for the improvement of project deliverables.

The meeting allowed to make good progress in several directions, including the structure and functionality of tools for data export, the BIRO XML format and various issues related to data standardization and loading intom the BIRO system. The Privacy Impact Assessment (WP5) Consensus Panel was successfully conducted using a questionnaire submitted to all participants. This meeting reached the fundamental milestone of choosing the best architecture for the BIRO framework.

The structure of the template for the BIRO Diabetes Report has been also agreed. Critical issues of data transfer between different geographical areas have been also discussed as well as a planned expansion of the Consortium.

BIRO partners met in Scotland for a Technical meeting. The meeting focused on three major topics: technical aspects, privacy impact and new EU applications

S.Cunningham presented the data dictionary and a final draft of the BIRO XML Schema. F.Carinci presented the database engine built using the Umbria database and a test application of the statistical engine. Partners released the design of a pilot data analysis associated to the structure of aggregate tables.

C.T.Di Iorio, facilitator of Privacy Impact Assessment (WP5) summarized the result of activities carried out so far, including a review of the literature, the identification of the main alternatives for the BIRO privacy architecture, the major implications of each option, and the future steps that will be required to evaluate the information flow.

P.Beck presented the plan of a new tool for the secure transmission of data bundles from each partner to the central server and web portal (part of WP Communication Software). Representatives of the Cyprus Ministry of Health reported that BIRO is having a major impact on the development of a diabetes register across the island.

D13.1 "Techincal Implementation Report Year 1" delivered (WP Leader: University of Perugia; private).

The BIRO Project delivered a stream of reports according to the expected schedule: D3.1 "Common Dataset" (WP Leader: University of Dundee; public); D5.1 "Preliminary Privacy Impact Assessment" (WP Leader: University of Perugia; public); D15.1 "Evaluation year 1" (WP Leader: University of Perugia; private)

A BIRO poster has been presented at the IDF World Conference Cape Town, South Africa

Results of the BIRO project have been presented at Task Force on Major and Chronic Diseases, DG-SANCO, Luxembourg

Investigators of the BIRO Consortium gathered in Graz. The meeting allowed to refine and complete concepts associated to the data dictionary after the delivery of the clinical review.

The Graz meeting represented a turning point for the implementation of BIRO project. Firm steps for the construction of the system were undertaken.The meeting allowed to conduct a requirement analysis for the B.I.R.O data model and to define major software specifications as well as the prospective alternatives for the B.I.R.O architecture.

Partners have also discussed in detail the plan of the Privacy Impact Assessment (WP5). The principal aspect identified was the importance of raising the awareness of the problem of personal data protection that is still not highly regarded among researchers and data users. It was remarked that it is essential that the architecture and the Consortium are well prepared to move from one privacy policy to a more restrictive one, the latter being a likely scenario for the future European framework.

A new BIRO brochure and the BIRO website were presented to all partners.

The BIRO Consortium delivered the Report D2.1 "Clinical Review" delivered (WP Leader: Joanneum Research; public)

Partners revised the draft of the Deliverable "Clinical review” choosing best indicators to be included in the BIRO short list as target outputs of data analysis.

The Project Coordination Board defined the categories of BIRO users that are to be taken into account to drive te development of all BIRO templates and the associated web portal.

The Malta meeting included a special session on Technology Transfer. The dedicated workshop produced an overview of the current situation in Malta, Cyprus and Romania. The workshop allowed to specify he Technology Transfer Report Index that describes all the activities foreseen for the specific WP.

Partners of the BIRO project meet in Dundee. The Consortium agreed that individual data can only be processed at the local level to produce aggregated tables that are shared to produce target indicators. The desired level of aggregation must be decided by the Consortium considering both technological and privacy protection issues. A common XML is going to be defined to harmonize information extracted from different sources.

Target diabetes indicators should be driven by a proper consideration of the different categories of BIRO users. Fred Storms from the EUDIP/EUCIP Consortia provided an overview of the projects, indicating their complementarity to the BIRO approach.

Partners of the EU co-funded BIRO project gather for the first time in Perugia for the kick-off meeting. The meeting focused on the discussion of the workplan and allowed to agree all operational steps required to realize its major objectives.

Partners agreed to concentrate on the application of advanced statistical analysis on data systems that are already in place.

The meeting allowed to define the foundations of the BIRO infrastructure through a flexible Dataset and a Data Dictionary integrating all major diabetes indicators. Partners agreed that registries with varying levels of completeness will be connected through a common, simpler dataset.

Partners of the European BIRO project met for the first time in the occasion of the ISGIID Conference to discuss the workplan and how to best fit their role to the activities of the Consortium. The meeting was opened by Prof. Massi Benedetti who described the BIRO project as an optimal way for the Commission to get reliable and regularly updated information through independent data collection.

Primary objective of the meeting was to introduce each other by providing a presentation of partners' activities in the respective countries.

The major discussion focused on the construction of the BIRO data model, raising the issue of the compatibility of different registers and the way they could talk each other through the use of a common structure. The meeting allowed to define the content of the different workpackages and to assign responsibilities to each partner.