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Primary data sources

Severe Chronic Neutropenia International Registry (SCNIR)

Severe Chronic Neutropenia International Registry Neutropenia register Neutropenia is a blood disorder, in which the number of neutrophils (white blood cells) in the blood is too low. The Severe Chronic Neutropenia International Registry (SCNIR) was estab ...

The National Haemophilia Database

United Kingdom Haemophilia Centre Doctors' Organisation (UKHCDO) Haemophilia Database The National Haemophilia Database (NHD) is a register of patients with bleeding disorders living in the UK, originally established in Oxford in 1968. This database ...

UK Cystic Fibrosis Registry

Cystic Fibrosis Trust Cystic Fibrosis Registry The UK Cystic Fibrosis Registry tracks the health of people with CF throughout the UK; its primary purpose is to help drive up the standard of clinical care. In 2007 the Cystic Fibrosis Trust implemented the ...

UK Epilepsy and Pregnancy Register

The UK Epilepsy and Pregnancy Register Registry for pregnant women with epilepsy The UK Epilepsy and Pregnancy register was established in 1996 for pregnant women in the UK. The major objective of the register is to obtain and publish information on the f ...

UK Renal Registry (UKRR)

UK Renal Registry (UKRR) Renal disease registry The UK Renal Registry (UKRR) is a resource for the development of patient care in renal disease. It was established by the Renal Association with support from the Department of Health, the British Associatio ...

National Pulmonary Hypertension Unit Database

Centre for Lung Health Pulmonary arterial hypertension register Pulmonary arterial hypertension includes a group of diseases incorporating Idiopathic Pulmonary Arterial Hypertension (IPAH) and PAH related to various underlying medical conditions.  With th ...

Northern Ireland Newborn Hearing Screening Programme Database

Public Health Agency (PHA) Database on newborn hearing screening The current newborn hearing screening programme in Northern Ireland, which has been in place since October 2005, is offered to all newborn infants. The aim of the screening programme is to r ...

Northern Ireland Newborn Screening Programme Database

Public Health Agency (PHA) Database on newborn screening In the first week after birth, all babies in Northern Ireland are offered screening ('heel prick test') for a range of inherited conditions including phenylketonuria (PKU), congenital hypo ...

Understanding Society: Early findings from the first wave of the UK's Household Longitudinal Study

Institute for Social and Economic Research A major research study designed to provide new evidence about the people of the UK, their lives, experiences, behaviours and beliefs. Understanding Society is the new UK Household Longitudinal Study following a s ...

Health Service Personnel Census

HR Management Information, Health Service Executive HEALTH SERVICES, HUMAN RESOURCE MANAGEMENT, MEDICAL STAFF Health Service employment is measured through the Health Service Personnel Census which collates employment data in respect of the Health Service ...

Cardiac Surgery Register for patients attending Cork University Hospital

Cardiac Service Division, Cork University Hospital Cardiac surgical, Cardiovascular disease, Surgery This register captures data on cardiac surgical stay in the hospital on a computer-based system. This includes demographic, clinical and administrative da ...

Cardiac Surgery Register for patients who attend Galway University Hospital

Society for Cardio Thoracic Surgery in Great Britain and Ireland (SCTS). The European Association for Cardio-Thoracic Surgery (EACTS) Cardiac surgical, Cardiovascular disease, Surgery This is a register for all patients who attend the Galway University Ho ...

Coronary Heart Attack Ireland Register (CHAIR)

Health Service Executive (HSE) CARDIOVASCULAR DISEASE, DEMOGRAPHY, DIAGNOSIS, MEDICINE, RISK FACTOR CHAIR is a computer register that gathers information on hospital patients admitted with suspected or confirmed acute coronary syndromes in order to improv ...

e-Heartbeat

Health Service Executive (HSE) Acute myocardial infarction (AMI) The vision of the e-Heartbeat programme is to save lives in Ireland through implementing and assuring best practice in the care of acute myocardial infarction (AMI) patients using the Americ ...

European Surveillance of Congenital Anomalies (EUROCAT)

EUROCAT Epidemiological, Surveillance, Congenital anomalies EUROCAT is a European network of population-based registries for the epidemiologic surveillance of congenital anomalies. Established in 1979, EUROCAT now surveys more than 1.7 million births per ...

Organisation for Economic Co-Operation and Development (OECD) Health Data

The Health Division, within the Directorate for Employment, Labour and Social Affairs of the OECD Health data OECD Health Data, maintained by the OECD, enables analyses and lessons to be drawn from comparisons of the health care systems of the thirty memb ...

Lifeways

University College Dublin School of Public Health & Population Science Irish longitudinal life-course data Lifeways is a unique cohort study, designed to capture Irish longitudinal life-course data, by recruiting three generations of the same family. ...

SHARE- Survey of Health, Ageing and Retirement in Europe (SHARE)

Geary Institute, University College Dublin Database of micro data on health, socioeconomic status and social and family networks The Survey of Health, Ageing and Retirement in Europe (SHARE) is a multidisciplinary and cross-national panel database of micr ...

TILDA- The Irish Longitudinal Study on Ageing

Trinity College Dublin (TCD) The health, lifestyles and financial situation of 8,000 to 10,000 people as they grow older The Irish Longitudinal Study on Ageing (TILDA) was launched in November 2006. This study will explore the health, lifestyles and finan ...

Eastern Area Cerebral Palsy Register

Central Remedial Clinic Confidential Cerebral Palsy (CP) Register This is a confidential Cerebral Palsy (CP) Register for the Eastern area of Ireland (covering Greater Dublin, Kildare, Wicklow and Meath). Perinatal and paediatric descriptors are collected ...