Hvad er PROCRIN? DMCG.dk Repræsentantskabsmøde 4. marts 2015

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1 Hvad er PROCRIN? DMCG.dk Repræsentantskabsmøde 4. marts 2015

2

3 Baggrund for PROCRIN Program for Clinical Research Infrastructure Startede maj 2012 på Lundbeckfondens initiativ Task force: Erik Juhl Henrik Kehlet Birgitte Nauntofte Anne Marie Engell Mikael Rørth Niels Borregaard Nina Espegård Hassel Henrik Toft Sørensen Processen Møde i Tuborg Havn 15. august 2012 Indsendelse 1. november februar april april 2014 (final) Status: forventet opstart 1. november 2014

4 Mål og vision The overarching aim of PROCRIN is to bridge research and clinical practice. The program s ambitious vision is to support the longterm effort to ensure that all data related to a person throughout the entire health care system are collected systematically, undergo quality assurance, and are available for research and clinical purposes, -while protecting the confidentiality of individuals.

5 From better data to improved health care

6 Projektgruppen

7 Overordnet organisation

8 PROCRINs subprogrammer PROCRIN består af 5 subprogrammer som sammen skal sikre: Data af høj kvalitet (Subprogram 1-3) Ekspertise (Subprogram 4) Innovation og kommunikation (Subprogram 5)

9 Subprogram 1 General practice research database Establishment of a research platform for general practice data. Programleder: Mogens Vestergaard Daglig leder: Bodil Hammer-Bech

10 Subprogram 2 Clinical quality databases Creation of a data infrastructure containing information across all clinical quality databases, standardization of data, and development of guidelines for data collection. Programleder: Paul Bartels, Regionernes Kliniske Kvalitetsudviklingsprogram (RKKP)

11 Subprogram 3 National health registries Improvement of data completeness and data quality in the national health registries. Programleder: Poul Erik Hansen, SSI

12 Subprogram 4 Clinical consultancy function Establishment of a clinical consultancy function covering all Danish regions, providing Danish clinical investigators with an overview of all health data recorded for Danish patients. The consultancy function will assist with data access, study design, data collection, linkage of datasets from multiple registries, statistical analysis and reporting. The aim is to improve data access for individual researchers, hospitals, and universities. Programleder: Henrik Toft Sørensen

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14 The complete research proces Research Ideas Study planning Protocol Coordination and approvals from organisations responsible for the relevant databases Danish Data Protection Agency Ethical committee Approvals from the various databases Data output from organisations responsible for the relevant databases Files (SAS, STATA, etc) Linkage of data Analyses Clinical interpretation of the data Reporting of the results

15 Subprogram 5 PROCRIN scientific coordinating center Establishment of a PROCRIN scientific coordinating center to support the overall administration of the initiative, foster cooperation and interaction among researchers and stakeholders, provide research training and innovation, and promote Danish clinical research in national and international efforts, in collaboration with Innovation Centre Denmark a Division of the Ministry of Foreign Affairs supporting innovation and growth through partnerships with leading international academic institutions. Moreover, the PROCRIN scientific coordinating center will be responsible for construction and supervision of the datasets in Subprograms 1 and 2. The PROCRIN scientific coordinating center will develop methods for analyzing large datasets, allowing better definition of patient phenotypes using structured data (demographics, diagnoses, medications, and laboratory measurements), as well as using unstructured clinical text e.g. radiological reports and discharge summaries. Programleder: Henrik Toft Sørensen

16 Subprogram 5 Experts in large data science: Gheorghe Luta, Georgetown University, Washington DC, will be appointed professor (20%) Stanley Lemeshow, Ohio State University Adjunct professor Alan Brookhart, University of North Carolina Adjunct professor Irene Petersen, University College London Visiting professor

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