Charles Auffray1,2, Rudi Balling3, Inês Barroso4, László Bencze5, Mikael Benson6, Jay Bergeron7, Enrique Bernal-Delgado8, Niklas Blomberg9, Christoph Bock10,11,12, Ana Conesa13,14, Susanna Del Signore15, Christophe Delogne16, Peter Devilee17, Alberto Di Meglio18, Marinus Eijkemans19, Paul Flicek20, Norbert Graf21, Vera Grimm22, Henk-Jan Guchelaar23, Yi-Ke Guo24, Ivo Glynne Gut25, Allan Hanbury26, Shahid Hanif27, Ralf-Dieter Hilgers28, Ángel Honrado29, D Rod Hose30, Jeanine Houwing-Duistermaat31, Tim Hubbard32,33, Sophie Helen Janacek20, Haralampos Karanikas34, Tim Kievits35, Manfred Kohler36, Andreas Kremer37, Jerry Lanfear38, Thomas Lengauer12, Edith Maes39, Theo Meert40, Werner Müller41, Dörthe Nickel42, Peter Oledzki43, Bertrand Pedersen44, Milan Petkovic45, Konstantinos Pliakos46, Magnus Rattray41, Josep Redón I Màs47, Reinhard Schneider48, Thierry Sengstag49, Xavier Serra-Picamal50, Wouter Spek51, Lea A I Vaas36, Okker van Batenburg51, Marc Vandelaer52, Peter Varnai53, Pablo Villoslada54, Juan Antonio Vizcaíno20, John Peter Mary Wubbe55, Gianluigi Zanetti56,57. 1. European Institute for Systems Biology and Medicine, 1 avenue Claude Vellefaux, 75010, Paris, France. cauffray@eisbm.org. 2. CIRI-UMR5308, CNRS-ENS-INSERM-UCBL, Université de Lyon, 50 avenue Tony Garnier, 69007, Lyon, France. cauffray@eisbm.org. 3. Luxembourg Centre for Systems Biomedicine, University of Luxembourg, 7 Avenue des Hauts Fourneaux, 4362, Esch-sur-Alzette, Luxembourg. rudi.balling@uni.lu. 4. Wellcome Trust Sanger Institute, Wellcome Genome Campus, Hinxton, Cambridge, CB10 1SA, UK. 5. Health Services Management Training Centre, Faculty of Health and Public Services, Semmelweis University, Kútvölgyi út 2, 1125, Budapest, Hungary. 6. Centre for Personalised Medicine, Linköping University, 581 85, Linköping, Sweden. 7. Translational & Bioinformatics, Pfizer Inc., 300 Technology Square, Cambridge, MA, 02139, USA. 8. Institute for Health Sciences, IACS - IIS Aragon, San Juan Bosco 13, 50009, Zaragoza, Spain. 9. ELIXIR, Wellcome Genome Campus, Hinxton, Cambridge, CB10 1SD, UK. 10. CeMM Research Center for Molecular Medicine of the Austrian Academy of Sciences, Lazarettgasse 14, AKH BT25.2, 1090, Vienna, Austria. 11. Department of Laboratory Medicine, Medical University of Vienna, Lazarettgasse 14, AKH BT25.2, 1090, Vienna, Austria. 12. Max Planck Institute for Informatics, Campus E1 4, 66123, Saarbrücken, Germany. 13. Príncipe Felipe Research Center, C/Eduardo Primo Yúfera 3, 46012, Valencia, Spain. 14. University of Florida, Institute of Food and Agricultural Sciences (IFAS), 2033 Mowry Road, Gainesville, FL, 32610, USA. 15. Bluecompanion Ltd, 6 London Street (second floor), London, W2 1HR, UK. 16. Technology, Data & Analytics, KPMG Luxembourg, Société Coopérative, 39 Avenue John F. Kennedy, 1855, Luxembourg, Luxembourg. 17. Department of Human Genetics, Department of Pathology, Leiden University Medical Centre, Einthovenweg 20, 2333 ZC, Leiden, The Netherlands. 18. Information Technology Department, European Organization for Nuclear Research (CERN), 385 Route de Meyrin, 1211, Geneva 23, Switzerland. 19. Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Heidelberglaan 100, 3508 GA, Utrecht, The Netherlands. 20. European Molecular Biology Laboratory, European Bioinformatics Institute (EMBL-EBI), Wellcome Genome Campus, Hinxton, Cambridge, CB10 1SD, UK. 21. Department of Pediatric Oncology/Hematology, Saarland University, Campus Homburg, Building 9, 66421, Homburg, Germany. 22. Project Management Jülich, Forschungszentrum Jülich GmbH, Wilhelm-Johnen-Straße, 52428, Jülich, Germany. 23. Department of Clinical Pharmacy & Toxicology, Leiden University Medical Center, Albinusdreef 2, 2333 ZA, Leiden, The Netherlands. 24. Data Science Institute, Imperial College London, South Kensington, London, SW7 2AZ, UK. 25. CNAG-CRG, Center for Genomic Regulation, Barcelona Institute for Science and Technology (BIST), C/Baldiri Reixac 4, 08029, Barcelona, Spain. 26. Institute of Software Technology and Interactive Systems, TU Wien, Favoritenstrasse 9-11/188, 1040, Vienna, Austria. 27. The Association of the British Pharmaceutical Industry, 7th Floor, Southside, 105 Victoria Street, London, SW1E 6QT, UK. 28. Department of Medical Statistics, RWTH-Aachen University, Universitätsklinikum Aachen, Pauwelsstraße 30, 52074, Aachen, Germany. 29. SYNAPSE Research Management Partners, Diputació 237, Àtic 3ª, 08007, Barcelona, Spain. 30. Department of Infection, Immunity and Cardiovascular Disease and Insigneo Institute for In-Silico Medicine, Medical School, University of Sheffield, Beech Hill Road, Sheffield, S10 2RX, UK. 31. Department of Statistics, School of Mathematics, University of Leeds, Leeds, LS2 9JT, UK. 32. Department of Medical & Molecular Genetics, King's College London, London, SE1 9RT, UK. 33. Genomics England, London, EC1M 6BQ, UK. 34. National and Kapodistrian University of Athens, Medical School, Xristou Lada 6, 10561, Athens, Greece. 35. Vitromics Healthcare Holding B.V., Onderwijsboulevard 225, 5223 DE, 's-Hertogenbosch, The Netherlands. 36. Fraunhofer Institute for Molecular Biology and Applied Ecology ScreeningPort, Schnackenburgallee 114, 22525, Hamburg, Germany. 37. ITTM S.A., 9 avenue des Hauts Fourneaux, 4362, Esch-sur-Alzette, Luxembourg. 38. Research Business Technology, Pfizer Ltd, GP4 Building, Granta Park, Cambridge, CB21 6GP, UK. 39. Health Economics & Outcomes Research, Deloitte Belgium, Berkenlaan 8A, 1831, Diegem, Belgium. 40. Janssen Pharmaceutica N.V., R&D G3O, Turnhoutseweg 30, 2340, Beerse, Belgium. 41. Faculty of Life Sciences, University of Manchester, AV Hill Building, Oxford Road, Manchester, M13 9PT, UK. 42. UMR3664 IC/CNRS, Institut Curie, Section Recherche, Pavillon Pasteur, 26 rue d'Ulm, 75248, Paris cedex 05, France. 43. Linguamatics Ltd, 324 Cambridge Science Park Milton Rd, Cambridge, CB4 0WG, UK. 44. PwC Luxembourg, 2 rue Gerhard Mercator, 2182, Luxembourg, Luxembourg. 45. Philips, HighTechCampus 36, 5656AE, Eindhoven, The Netherlands. 46. Department of Public Health and Primary Care, KU Leuven Kulak, Etienne Sabbelaan 53, 8500, Kortrijk, Belgium. 47. INCLIVA Health Research Institute, University of Valencia, CIBERobn ISCIII, Avenida Menéndez Pelayo 4 accesorio, 46010, Valencia, Spain. 48. Luxembourg Centre for Systems Biomedicine, University of Luxembourg, 7 Avenue des Hauts Fourneaux, 4362, Esch-sur-Alzette, Luxembourg. 49. Swiss Institute of Bioinformatics (SIB) and University of Basel, Klingelbergstrasse 50/ 70, 4056, Basel, Switzerland. 50. Agency for Health Quality and Assessment of Catalonia (AQuAS), Carrer de Roc Boronat 81-95, 08005, Barcelona, Spain. 51. EuroBioForum Foundation, Chrysantstraat 10, 3135 HG, Vlaardingen, The Netherlands. 52. Integrated BioBank of Luxembourg, 6 rue Nicolas-Ernest Barblé, 1210, Luxembourg, Luxembourg. 53. Technopolis Group, 3 Pavilion Buildings, Brighton, BN1 1EE, UK. 54. Hospital Clinic of Barcelona, Institute d'Investigacions Biomediques August Pi Sunyer (IDIBAPS), Rosello 149, 08036, Barcelona, Spain. 55. European Platform for Patients' Organisations, Science and Industry (Epposi), De Meeûs Square 38-40, 1000, Brussels, Belgium. 56. CRS4, Ed.1 POLARIS, 09129, Pula, Italy. 57. BBMRI-ERIC, Neue Stiftingtalstrasse 2/B/6, 8010, Graz, Austria.
The published article [1] has two points of confusion in the section entitled “Technical challenges related to the management of electronic health records”. Firstly, the International Rare Diseases Research Consortium (IRDiRC) has developed policies and guidelines on approaches to data sharing meant to enable and improve the development of diagnoses and therapies for rare diseases. However, at present, IRDiRC has not developed best practices for the management of electronic health records (EHRs). Secondly, RARE-Bestpractices is a European Commission 7th Framework Programme (FP7) funded initiative, independent of IRDiRC. RARE-Bestpractices contributes to IRDiRC goals and objectives; however the initiative itself is not sponsored nor connected to IRDiRC.
Authors: Charles Auffray; Rudi Balling; Inês Barroso; László Bencze; Mikael Benson; Jay Bergeron; Enrique Bernal-Delgado; Niklas Blomberg; Christoph Bock; Ana Conesa; Susanna Del Signore; Christophe Delogne; Peter Devilee; Alberto Di Meglio; Marinus Eijkemans; Paul Flicek; Norbert Graf; Vera Grimm; Henk-Jan Guchelaar; Yi-Ke Guo; Ivo Glynne Gut; Allan Hanbury; Shahid Hanif; Ralf-Dieter Hilgers; Ángel Honrado; D Rod Hose; Jeanine Houwing-Duistermaat; Tim Hubbard; Sophie Helen Janacek; Haralampos Karanikas; Tim Kievits; Manfred Kohler; Andreas Kremer; Jerry Lanfear; Thomas Lengauer; Edith Maes; Theo Meert; Werner Müller; Dörthe Nickel; Peter Oledzki; Bertrand Pedersen; Milan Petkovic; Konstantinos Pliakos; Magnus Rattray; Josep Redón I Màs; Reinhard Schneider; Thierry Sengstag; Xavier Serra-Picamal; Wouter Spek; Lea A I Vaas; Okker van Batenburg; Marc Vandelaer; Peter Varnai; Pablo Villoslada; Juan Antonio Vizcaíno; John Peter Mary Wubbe; Gianluigi Zanetti Journal: Genome Med Date: 2016-06-23 Impact factor: 11.117
Authors: Liepollo Ntlhakana; Gill Nelson; Katijah Khoza-Shangase; Elton Dorkin Journal: Int J Environ Res Public Health Date: 2021-12-21 Impact factor: 3.390