WP8 Platform for population based registries EUBIROD Network meeting ROME, 23-24 November 2015 Simona Giampaoli Istjtuto Superiore di Sanità Rome, Italy This project is funded by the Health www.bridge- Programme of the health.eu European Union
BRIDGE-Health The BRIDGE-Health project aims to work towards a European health information and data generation network covering major health policy areas by promoting the coordination and covergence of existing projects in health information This project is funded by the Health Programme of the European Union
BRIDGE-Health mission • T o develop a framework for a comprehensive, integrated and sustainable health information structure which incorporates know-how and technical tools to coordinate and harmonise research and surveillance for Member States • T o develop blueprints for specifjc actions (tasks) of a EU-HIS • T o propose possibilities to develop the health information structure in a sustainable manner • T o evaluate difgerent structural and istitutional options including a comprehensive European Research Infrastructure Consortium (ERIC) in health information This project is funded by the Health Programme of the European Union
WP Title WP1 Coordinatjon of the project WP2 Disseminatjon of the project WP3 Evaluatjon of the project WP4 European Core Health Indicators Monitoring WP5 Harmonized populatjon based health examinatjon survey WP6 Impacts of environmental chemicals on health WP7 Reproductjve, maternal, newborn, child, adolescents WP8 Platgorm for populatjon based registers WP9 Platgorm for Injury Surveillance WP10 Building a Platgorm for administratjve data on health care WP11 Integratjon of approaches into a comprehensive EU informatjon system for health and health care monitoring and reportjng WP12 Evaluatjon of health care system This project is funded by the Health Programme of the European Union
Structure BRIDGE Health This project is funded by the Health Programme of the European Union
BRIDGE-Health WP8 Platform for population based registries Aims – T o gather and harmonise procedures/methods and best practices of population-based registries – T o improve standardisation and quality of data collection – T o facilitates implementation, sustainability, and maintainance – T o provide community health indicators occurrence, quality of care and outcomes This project is funded by the Health Programme of the European Union
BRIDGE-Health A population based registers is intended to cover all residents in a given geographic area within a time period and includes all events of a specifjc disease for – monitoring the occurrence of the disease – understanding the difgerences and changes in the natural disease dynamics – identifying vulnerable groups – monitoring in and out of hospital case fatality – monitoring the consequence of disease in the community in terms of medication and rehabilitation – monitoring the utilization of new diagnostic tools, treatment and their impact This project is funded by the Health EJCPR - 2008 Programme of the European Union
WH O O M O O N N I I C A P r o j e c t C C H H D C C A S E E F A T A L L I I T Y - - M M e e n n 3 3 5 5 - 6 4 4 y y r s USA-STA UNK-BEL SPA-CAT RUS-MOC NEZ-AUC ITA-FRI ITA-BRI ICE-ICE GER-BRE GER-AUR FRIULI FRA-LIL 42% FIN-NKA DEN-GLO CAN-HAL AUS-NEW 0% 20% 40% 60% 80% 100% PRE-HOSPITAL WITHIN 24h >24h-28 days This project is funded by the Health Programme of the European Union
A M I / A C S S P o p u l a t i o o n n - - b a s e d R e g g i i s t e r s i n n E u u r r o o p p e : p o p u l a t i o n c h a r a c t e r i s t i c s This project is funded by the Health Programme of the European Union
A M I / A C S P o p u u l l a t i o n – b a s e d R e g i s t e r s i n E u u r r o o p p e : : c a s e d e fi n i t i o n M o o r r t a l i t y H D D R R L i n k a g e C o o u u n t r y I C D D v e r s i o n V a l i d a t i o o n n I C D D c o o d d e s ( * ) I C D D c o o d d e s ( * ) M o o r r t a l i t y y / H D D R R 4 4 1 1 0 0 - - 4 4 1 1 4 4 , , 4 4 2 2 8 E E C C G , , e e n n z z y y m m e s , s s y y m m p p t o m s , , B B e e l g g i i u m I I X X , , X X 4 1 1 0 0 - 4 1 1 4 4 , , 4 4 2 2 8 8 , 7 7 9 9 9 9 N a a m m e e , , d d a a t t e o o f f b b i i r r t t h h M O N I C C A A P T C A , C C A A B B G G N o o r r t h e r n D e n m a r k V V I I I I I I , X X 4 1 1 0 0 4 1 1 0 0 P I N N o v v a a l l i i d d a t i i o o n n 4 1 1 0 0 , , 4 1 1 1 1 F i n l a n d X 4 1 1 0 0 , 4 4 1 1 1 1 , , 4 4 2 2 8 8 , , 7 7 9 9 8 8 , , 7 9 9 9 9 P I N M M O O N N I I C C A A , , E E S C / / A A C C C P T C A , C C A A B B G G 4 4 1 1 0 0 - 4 1 1 4 4 , 4 4 2 2 8 8 , , 7 9 9 8 8 , 7 7 9 9 9 9 , F r a n c e I I X X , , X X 4 4 1 1 0 0 - - 4 4 1 1 4 4 , , 4 4 2 2 8 N a a m m e e , , d d a a t t e o o f f b b i i r r t t h h M O N I C C A A o o t t h h e e r r s 4 1 1 0 0 , , 4 1 1 1 1 G e r m a n y X 4 1 1 0 0 - - 4 4 1 1 4 4 , , 7 9 9 8 8 , , 7 7 9 9 9 N a a m m e e , , d d a a t t e o o f f b b i i r r t t h h M M O O N N I I C C A A , , E E S C / / A A C C C P T C A , C C A A B B G G I t a l y I I X X 4 4 1 1 0 0 - 4 1 1 4 4 , 7 7 9 9 8 8 , , 7 7 9 9 9 9 , , o o t t h h e r s 4 4 1 1 0 0 - - 4 4 1 1 4 4 N a a m m e e , , d d a a t t e o o f f b b i i r r t t h h M O N I C C A A 4 1 1 0 0 N o o r r w w a y X 4 1 1 0 0 P I N N o v v a a l l i i d d a t i i o o n n P T C C A A , C C A A B B G G 4 4 1 1 0 0 - 4 1 1 4 4 , 4 4 2 2 8 8 , , 7 9 9 8 8 , 7 7 9 9 9 9 , S p a i n I I X X 4 4 1 1 0 0 - - 4 4 1 1 4 N a a m m e e , , d d a a t t e o o f f b b i i r r t t h h M O N I C C A A o o t t h h e e r r s N o o r r t h e r n S w e d e n – – X 4 1 1 0 0 , , 4 1 1 1 1 4 1 1 0 0 , , 4 1 1 1 1 P I N M O N I C C A A M O O N N I I C A This project is funded by the Health Programme of the European Union C a r d i o v a s c u l a r I n d i c a t o r s S u r v e i l l a n c e S e t
Platform for population based registries T ask 1 deliveries – Create a network of experts of population based registries – Identify standardised defjnitions for diseases, common procedures and methods to establish population based registries (including sources of information, population size, identifjcation and validation of events, quality control, ethical issues) to deliver estimates of ECHIM indicators of disease occurence – Set up a stepwise procedure to implement population based registries – Prepare guideline for training personnel involved in population based registries This project is funded by the Health Programme of the European Union
BRIDGE –Health Steering Committee 6-7 October 2015 Consortium agreement: in October, 7 institutions had not replayed yet; T or Vergata was one of those Timeline of deliveries was presented Discussion on conceptual framework of EU-HIS, fjnalising defjnitions of mission, vision, goals and tasks Presentation of Horizontal Activities, rationale and questions for each HA Dissemination: website, leafmet, 2015 EUPHA workshops Work of the WPs months 1-6 and plans for 6-12 This project is funded by the Health Programme of the European Union
BRIDGE –Health Steering Committee 6-7 October 2015 Conceptual framework of EU-HIS – Vision: EU-HIS provides the best available knowledge for decision makers to improve EU populations’ health and well-being – Mission: to improve population health of Europe by unnderstanding dynamics of health, identify best practices and comparison on local, regional, national, European and global level – Goals: to support social and health policy: – with comparable data (harmonisation and standardisation) – of high relevance and utility (priority setting methods) – identifying gaps and addressing information needs – addressing ethical and legal issues This project is funded by the Health Programme of the European Union
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