| WP1 |
Coordination |
|
|
| Partner |
Acronym |
Institution |
Lead Contact |
| 1 |
SGUL |
St George's, University of London |
Prof. Joan Morris |
| 2 |
UU |
University of Ulster |
Prof. Maria Loane |
| 3 |
RSD |
Hospital Lillebaelt, Region Syddanmark Denmark |
Dr. Ester Garne |
| 4 |
UNEW |
University of Newcastle upon Tyne |
Prof. Judith Rankin |
| 5 |
UNIFE |
Università Degli Studi Di Ferrara |
Dr. Amanda Neville |
| 6 |
KDB |
Klinika za djecje bolesti Zagreb |
Prof. Ingeborg Barišić |
| 7 |
CNR-IFC |
Consiglio Nazionale Delle Ricerche- Institute of Clinical Physiology |
Dr. Anna Pierini |
| 8 |
UMCG |
Universitair Medisch Centrum Groningen, |
Dr. Hermien de Walle |
| 12 |
PUMS |
Poznan University of Medical Sciences |
Prof. Anna Latos-Bielenska |
| 20 |
BIOMED |
Biomedical Computing Ltd |
Dr. James Densem |
|
|
|
|
| WP2 |
Central Results Repository |
|
| Partner |
Acronym |
Institution |
Lead Contact |
| 1 |
SGUL/BINOCAR |
St George's, University of London |
Prof. Joan Morris |
| |
BINOCAR_CAROBB |
Congenital Anomaly Register for Oxfordshire, Berkshire & Buckinghamshire |
Prof. Jennifer Kurinczuk |
| |
BINOCAR_EMYSCAR |
East Midlands and South Yorkshire Congenital Anomalies Register, University of Leicester |
Prof. Elizabeth Draper |
| |
BINOCAR_NORCAS |
Northern Congenital Abnormality Survey |
Prof. Judith Rankin |
| |
BINOCAR_SWCAR |
South West Congenital Anomalies Register |
Dr. Karen Luyt |
| |
BINOCAR_WANDA |
Wessex Antenatally Detected Anomalies Register |
Dr. Diana Wellesley |
| 2 |
UU |
University of Ulster |
Prof. Maria Loane |
| 3 |
RSD |
Hospital Lillebaelt, Region Syddanmark Denmark |
Dr. Ester Garne |
| 4 |
UNEW |
University of Newcastle upon Tyne |
Prof. Judith Rankin |
| 5 |
UNIFE |
Università Degli Studi Di Ferrara |
Dr. Amanda Neville |
| 6 |
KDB |
Klinika za djecje bolesti Zagreb |
Prof. Ingeborg Barišić |
| 7 |
CNR-IFC |
Consiglio Nazionale Delle Ricerche- Institute of Clinical Physiology |
Dr. Anna Pierini |
| 8 |
UMCG |
Universitair Medisch Centrum, Groningen |
Dr. Hermien de Walle |
| 9 |
PHW NHS |
Public Health Wales National Health Service Trust |
Mr. David Tucker |
| 10 |
INSERM |
Institut National de la Sante et de la Recherche Medicale |
Dr. Babak Khoshnood |
| 11 |
FISABIO |
Fundacion Para el Fomento de la Investigacion Sanitaria Y Biomedica de la Comunitat Valenciana |
Dr. Clara Cavero Carbonell |
| 13 |
THL |
Terveyden ja Hyvinvoinnin Laitos |
Prof. Mika Gissler |
| 14 |
OMNI NET |
International Charitable Fund Omni-Net for Children |
Dr. Nataliia Zymak-Zakutnya |
| 15 |
OVGU |
Otto-Von-Guericke-Universitaet Magdeburg, |
Dr. Anke Rissmann |
| 16 |
INSA |
Instituto Nacional de Saude Dr. Ricardo Jorge |
Dr. Carlos Matias Dias |
| 17 |
CHUReunion |
Hospitalier Universitaire De La Reunion |
Dr. Hanitra Randrianaivo |
| 18 |
PIH |
Provinciaal Instituut Voor Hygiene, |
Dr. Vera Nelen |
| 19 |
BIOEF |
Asociacion Instituto Biodonostia |
Dr. Olatz Mokoroa Carollo |
| 20 |
BIOMED |
Biomedical Computing Ltd |
Dr. James Densem |
| 22 |
SU |
Swansea University |
Mr. Daniel Thayer |
| i |
MALTA |
Ministry for Health, Malta |
Dr. Miriam Gatt |
| ii |
NORWAY |
The Norwegian Institute of Public Health and the University of Bergen |
Prof. Kari Klungsøyr |
|
|
|
|
| WP3 |
Mortality |
|
|
| Partner |
Acronym |
Institution |
Lead Contact |
| 1 |
SGUL |
St George's, University of London |
Prof. Joan Morris |
| |
BINOCAR_CAROBB |
Congenital Anomaly Register for Oxfordshire, Berkshire & Buckinghamshire |
Prof. Jennifer Kurinczuk |
| |
BINOCAR_EMYSCAR |
East Midlands and South Yorkshire Congenital Anomalies Register, University of Leicester |
Prof. Elizabeth Draper |
| |
BINOCAR_NORCAS |
Northern Congenital Abnormality Survey |
Prof. Judith Rankin |
| |
BINOCAR_SWCAR |
South West Congenital Anomalies Register |
Dr. Karen Luyt |
| |
BINOCAR_WANDA |
Wessex Antenatally Detected Anomalies Register |
Dr. Diana Wellesley |
| 3 |
RSD |
Hospital Lillebaelt, Region Syddanmark Denmark |
Dr. Ester Garne |
| 4 |
UNEW |
University of Newcastle upon Tyne |
Prof. Judith Rankin |
| 5 |
UNIFE |
Università Degli Studi Di Ferrara |
Dr. Amanda Neville |
| 6 |
KDB |
Klinika za djecje bolesti Zagreb |
Prof. Ingeborg Barišić |
| 7 |
CNR-IFC |
Consiglio Nazionale Delle Ricerche- Institute of Clinical Physiology |
Dr. Anna Pierini |
| 8 |
UMCG |
Universitair Medisch Centrum, Groningen |
Dr. Hermien de Walle |
| 9 |
PHW NHS |
Public Health Wales National Health Service Trust |
Mr. David Tucker |
| 10 |
INSERM |
Institut National de la Sante et de la Recherche Medicale |
Dr. Babak Khoshnood |
| 11 |
FISABIO |
Fundacion Para el Fomento de la Investigacion Sanitaria Y Biomedica de la Comunitat Valenciana |
Dr. Clara Cavero Carbonell |
| 13 |
THL |
Terveyden ja Hyvinvoinnin Laitos |
Prof. Mika Gissler |
| 14 |
OMNI NET |
International Charitable Fund Omni-Net for Children |
Dr. Nataliia Zymak-Zakutnya |
| 15 |
OVGU |
Otto-Von-Guericke-Universitaet Magdeburg, |
Dr. Anke Rissmann |
| 17 |
CHUReunion |
Hospitalier Universitaire De La Reunion |
Dr. Hanitra Randrianaivo |
| 18 |
PIH |
Provinciaal Instituut Voor Hygiene, |
Dr. Vera Nelen |
| 19 |
BIOEF |
Asociacion Instituto Biodonostia |
Dr. Olatz Mokoroa Carollo |
| 22 |
SU |
Swansea University |
Mr. Daniel Thayer |
| i |
MALTA |
Ministry for Health, Malta |
Dr. Miriam Gatt |
| ii |
NORWAY |
The Norwegian Institute of Public Health and the University of Bergen |
Prof. Kari Klungsøyr |
|
|
|
|
|
|
|
|
| WP4 |
Morbidity |
|
|
| Partner |
Acronym |
Institution |
Lead Contact |
| 1 |
SGUL |
St George's, University of London |
Prof. Joan Morris |
| |
BINOCAR_CAROBB |
Congenital Anomaly Register for Oxfordshire, Berkshire & Buckinghamshire |
Prof. Jennifer Kurinczuk |
| |
BINOCAR_EMYSCAR |
East Midlands and South Yorkshire Congenital Anomalies Register, University of Leicester |
Prof. Elizabeth Draper |
| |
BINOCAR_NORCAS |
Northern Congenital Abnormality Survey |
Prof. Judith Rankin |
| |
BINOCAR_SWCAR |
South West Congenital Anomalies Register |
Dr. Karen Luyt |
| |
BINOCAR_WANDA |
Wessex Antenatally Detected Anomalies Register |
Dr. Diana Wellesley |
| 2 |
UU |
University of Ulster |
Prof. Maria Loane |
| 3 |
RSD |
Hospital Lillebaelt, Region Syddanmark Denmark |
Dr. Ester Garne |
| 4 |
UNEW |
University of Newcastle upon Tyne |
Prof. Judith Rankin |
| 5 |
UNIFE |
Università Degli Studi Di Ferrara |
Dr. Amanda Neville |
| 6 |
KDB |
Klinika za djecje bolesti Zagreb |
Prof. Ingeborg Barišić |
| 7 |
CNR-IFC |
Consiglio Nazionale Delle Ricerche- Institute of Clinical Physiology |
Dr. Anna Pierini |
| 8 |
UMCG |
Universitair Medisch Centrum, Groningen |
Dr. Hermien de Walle |
| 9 |
PHW NHS |
Public Health Wales National Health Service Trust |
Mr. David Tucker |
| 11 |
FISABIO |
Fundacion Para el Fomento de la Investigacion Sanitaria Y Biomedica de la Comunitat Valenciana |
Dr. Clara Cavero Carbonell |
| 13 |
THL |
Terveyden ja Hyvinvoinnin Laitos |
Prof. Mika Gissler |
| 16 |
INSA |
Instituto Nacional de Saude Dr. Ricardo Jorge |
Dr. Carlos Matias Dias |
| 17 |
CHUReunion |
Hospitalier Universitaire De La Reunion |
Dr. Hanitra Randrianaivo |
| 19 |
BIOEF |
Asociacion Instituto Biodonostia |
Dr. Olatz Mokoroa Carollo |
| 22 |
SU |
Swansea University |
Mr. Daniel Thayer |
|
|
|
|
| WP5 |
Education |
|
|
| Partner |
Acronym |
Institution |
Lead Contact |
| 1 |
SGUL |
St George's, University of London |
Prof. Joan Morris |
| |
BINOCAR_CAROBB |
Congenital Anomaly Register for Oxfordshire, Berkshire & Buckinghamshire |
Prof. Jennifer Kurinczuk |
| |
BINOCAR_EMYSCAR |
East Midlands and South Yorkshire Congenital Anomalies Register, University of Leicester |
Prof. Elizabeth Draper |
| |
BINOCAR_NORCAS |
Northern Congenital Abnormality Survey |
Prof. Judith Rankin |
| |
BINOCAR_SWCAR |
South West Congenital Anomalies Register |
Dr. Karen Luyt |
| |
BINOCAR_WANDA |
Wessex Antenatally Detected Anomalies Register |
Dr. Diana Wellesley |
| 3 |
RSD |
Hospital Lillebaelt, Region Syddanmark Denmark |
Dr. Ester Garne |
| 4 |
UNEW |
University of Newcastle upon Tyne |
Prof. Judith Rankin |
| 5 |
UNIFE |
Università Degli Studi Di Ferrara |
Dr. Amanda Neville |
| 7 |
CNR-IFC |
Consiglio Nazionale Delle Ricerche- Institute of Clinical Physiology |
Dr. Anna Pierini |
| 9 |
PHW NHS |
Public Health Wales National Health Service Trust |
Mr. David Tucker |
| 13 |
THL |
Terveyden ja Hyvinvoinnin Laitos |
Prof. Mika Gissler |
| 22 |
SU |
Swansea University |
Mr. Daniel Thayer |
| i |
MALTA |
Ministry for Health, Malta |
Dr. Miriam Gatt |
| ii |
NORWAY |
The Norwegian Institute of Public Health and the University of Bergen |
Prof. Kari Klungsøyr |
|
|
|
|
| WP6 |
Accuracy of Anomaly Coding |
|
| Partner |
Acronym |
Institution |
Lead Contact |
| 1 |
SGUL |
St George's, University of London |
Prof. Joan Morris |
| |
BINOCAR_CAROBB |
Congenital Anomaly Register for Oxfordshire, Berkshire & Buckinghamshire |
Prof. Jennifer Kurinczuk |
| |
BINOCAR_EMYSCAR |
East Midlands and South Yorkshire Congenital Anomalies Register, University of Leicester |
Prof. Elizabeth Draper |
| |
BINOCAR_NORCAS |
Northern Congenital Abnormality Survey |
Prof. Judith Rankin |
| |
BINOCAR_SWCAR |
South West Congenital Anomalies Register |
Dr. Karen Luyt |
| |
BINOCAR_WANDA |
Wessex Antenatally Detected Anomalies Register |
Dr. Diana Wellesley |
| 3 |
RSD |
Hospital Lillebaelt, Region Syddanmark Denmark |
Dr. Ester Garne |
| 4 |
UNEW |
University of Newcastle upon Tyne |
Prof. Judith Rankin |
| 5 |
UNIFE |
Università Degli Studi Di Ferrara |
Dr. Amanda Neville |
| 6 |
KDB |
Klinika za djecje bolesti Zagreb |
Prof. Ingeborg Barišić |
| 7 |
CNR-IFC |
Consiglio Nazionale Delle Ricerche- Institute of Clinical Physiology |
Dr. Anna Pierini |
| 8 |
UMCG |
Universitair Medisch Centrum, Groningen |
Dr. Hermien de Walle |
| 9 |
PHW NHS |
Public Health Wales National Health Service Trust |
Mr. David Tucker |
| 11 |
FISABIO |
Fundacion Para el Fomento de la Investigacion Sanitaria Y Biomedica de la Comunitat Valenciana |
Dr. Clara Cavero Carbonell |
| 13 |
THL |
Terveyden ja Hyvinvoinnin Laitos |
Prof. Mika Gissler |
| 19 |
BIOEF |
Asociacion Instituto Biodonostia |
Dr. Olatz Mokoroa Carollo |
| 22 |
SU |
Swansea University |
Mr. Daniel Thayer |
|
|
|
|
| WP7 |
ConnectEpeople Eforum (closed 31 December 2019 by General Assembly vote)
|
|
| Partner |
Acronym |
Institution |
Lead Contact |
| 1 |
SGUL |
St George's, University of London |
Prof. Joan Morris |
| 2 |
UU |
University of Ulster |
Prof. Marlene Sinclair |
| 4 |
UNEW |
University of Newcastle upon Tyne |
Prof. Judith Rankin |
| 5 |
UNIFE |
Università Degli Studi Di Ferrara |
Dr. Amanda Neville |
| 6 |
KDB |
Klinika za djecje bolesti Zagreb |
Prof. Ingeborg Barišić |
| 7 |
CNR-IFC |
Consiglio Nazionale Delle Ricerche- Institute of Clinical Physiology |
Dr. Anna Pierini |
| 8 |
UMCG |
Universitair Medisch Centrum, Groningen |
Dr. Hermien de Walle |
| 11 |
FISABIO |
Fundacion Para el Fomento de la Investigacion Sanitaria Y Biomedica de la Comunitat Valenciana |
Dr. Clara Cavero Carbonell |
| 12 |
PUMS |
Poznan University of Medical Sciences |
Prof. Anna Latos-Bielenska |
| 15 |
OVGU |
Otto-Von-Guericke-Universitaet Magdeburg, |
Dr. Anke Rissmann |
| 16 |
INSA |
Instituto Nacional de Saude Dr. Ricardo Jorge |
Dr. Carlos Matias Dias |
| 17 |
CHUReunion |
Hospitalier Universitaire De La Reunion |
Dr. Hanitra Randrianaivo |
| 21 |
Redburn |
Redburn Solutions Limited |
Dr. David Elliott |
|
|
|
|
| WP8 |
Dissemination |
|
|
| Partner |
Acronym |
Institution |
Lead Contact |
| 1 |
SGUL |
St George's, University of London |
Prof. Joan Morris |
| 2 |
UU |
University of Ulster |
Prof. Maria Loane |
| 3 |
RSD |
Hospital Lillebaelt, Region Syddanmark Denmark |
Dr. Ester Garne |
| 4 |
UNEW |
University of Newcastle upon Tyne |
Prof. Judith Rankin |
| 5 |
UNIFE |
Università Degli Studi Di Ferrara |
Dr. Amanda Neville |
| 6 |
KDB |
Klinika za djecje bolesti Zagreb |
Prof. Ingeborg Barišić |
| 7 |
CNR-IFC |
Consiglio Nazionale Delle Ricerche- Institute of Clinical Physiology |
Dr. Anna Pierini |
| 8 |
UMCG |
Universitair Medisch Centrum, Groningen |
Dr. Hermien de Walle |
| 9 |
PHW NHS |
Public Health Wales National Health Service Trust |
Mr. David Tucker |
| 10 |
INSERM |
Institut National de la Sante et de la Recherche Medicale |
Dr. Babak Khoshnood |
| 11 |
FISABIO |
Fundacion Para el Fomento de la Investigacion Sanitaria Y Biomedica de la Comunitat Valenciana |
Dr. Clara Cavero Carbonell |
| 12 |
PUMS |
Poznan University of Medical Sciences |
Prof. Anna Latos-Bielenska |
| 13 |
THL |
Terveyden ja Hyvinvoinnin Laitos |
Prof. Mika Gissler |
| 14 |
OMNI NET |
International Charitable Fund Omni-Net for Children |
Dr. Nataliia Zymak-Zakutnya |
| 15 |
OVGU |
Otto-Von-Guericke-Universitaet Magdeburg, |
Dr. Anke Rissmann |
| 16 |
INSA |
Instituto Nacional de Saude Dr. Ricardo Jorge |
Dr. Carlos Matias Dias |
| 17 |
CHUReunion |
Hospitalier Universitaire De La Reunion |
Dr. Hanitra Randrianaivo |
| 18 |
PIH |
Provinciaal Instituut Voor Hygiene, |
Dr. Vera Nelen |
| 19 |
BIOEF |
Asociacion Instituto Biodonostia |
Dr. Olatz Mokoroa Carollo |
| 20 |
BIOMED |
Biomedical Computing Ltd |
Dr. James Densem |
|
|
|
|
| WP9 |
Ethics |
|
|
| Partner |
Acronym |
Institution |
Lead Contact |
| 1 |
SGUL/BINOCAR |
St George's, University of London |
Prof. Joan Morris |
| |
BINOCAR_CAROBB |
Congenital Anomaly Register for Oxfordshire, Berkshire & Buckinghamshire |
Prof. Jennifer Kurinczuk |
| |
BINOCAR_EMYSCAR |
East Midlands and South Yorkshire Congenital Anomalies Register, University of Leicester |
Prof. Elizabeth Draper |
| |
BINOCAR_NORCAS |
Northern Congenital Abnormality Survey |
Prof. Judith Rankin |
| |
BINOCAR_SWCAR |
South West Congenital Anomalies Register |
Dr. Karen Luyt |
| |
BINOCAR_WANDA |
Wessex Antenatally Detected Anomalies Register |
Dr. Diana Wellesley |
| 2 |
UU |
University of Ulster |
Prof. Maria Loane |
| 3 |
RSD |
Hospital Lillebaelt, Region Syddanmark Denmark |
Dr. Ester Garne |
| 4 |
UNEW |
University of Newcastle upon Tyne |
Prof. Judith Rankin |
| 5 |
UNIFE |
Università Degli Studi Di Ferrara |
Dr. Amanda Neville |
| 6 |
KDB |
Klinika za djecje bolesti Zagreb |
Prof. Ingeborg Barišić |
| 7 |
CNR-IFC |
Consiglio Nazionale Delle Ricerche- Institute of Clinical Physiology |
Dr. Anna Pierini |
| 8 |
UMCG |
Universitair Medisch Centrum, Groningen |
Dr. Hermien de Walle |
| 9 |
PHW NHS |
Public Health Wales National Health Service Trust |
Mr. David Tucker |
| 10 |
INSERM |
Institut National de la Sante et de la Recherche Medicale |
Dr. Babak Khoshnood |
| 11 |
FISABIO |
Fundacion Para el Fomento de la Investigacion Sanitaria Y Biomedica de la Comunitat Valenciana |
Dr. Clara Cavero Carbonell |
| 12 |
PUMS |
Poznan University of Medical Sciences |
Prof. Anna Latos-Bielenska |
| 13 |
THL |
Terveyden ja Hyvinvoinnin Laitos |
Prof. Mika Gissler |
| 14 |
OMNI NET |
International Charitable Fund Omni-Net for Children |
Dr. Nataliia Zymak-Zakutnya |
| 15 |
OVGU |
Otto-Von-Guericke-Universitaet Magdeburg, |
Dr. Anke Rissmann |
| 16 |
INSA |
Instituto Nacional de Saude Dr. Ricardo Jorge |
Dr. Carlos Matias Dias |
| 17 |
CHUReunion |
Hospitalier Universitaire De La Reunion |
Dr. Hanitra Randrianaivo |
| 18 |
PIH |
Provinciaal Instituut Voor Hygiene, |
Dr. Vera Nelen |
| 19 |
BIOEF |
Asociacion Instituto Biodonostia |
Dr. Olatz Mokoroa Carollo |
| 20 |
BIOMED |
Biomedical Computing Ltd |
Dr. James Densem |
| 21 |
Redburn |
Redburn Solutions Limited |
Dr. David Elliott |
| 22 |
SU |
Swansea University |
Mr. Daniel Thayer |
| i |
MALTA |
Ministry for Health, Malta |
Dr. Miriam Gatt |
| ii |
NORWAY |
The Norwegian Institute of Public Health and the University of Bergen |
Prof. Kari Klungsøyr |