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Primary data sources

National Newborn Bloodspot Screening Register

Health Service Executive (HSE) Newborn Bloodspot Screening (NBS) Register The National Newborn Bloodspot Screening Programme (NNBSP) screens all newborn babies for six conditions soon after birth, to ensure that any baby with one of these rare conditions ...

National Centre for Medical Genetics (NCMG)

National Centre for Medical Genetics (NCMG) Genetics The National Centre for Medical Genetics seeks to provide a comprehensive service for all patients and families in the Republic of Ireland affected by or at risk of a genetic disorder. The Centre, under ...

CRANE Database

Cleft Development Board Cleft lip and palate database The CRANE database is a record of information about children born with cleft lip and palate in England, Wales and Northern Ireland. The CRANE Database can be considered a continuation of the Craniofaci ...

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 ...

Irish Motor Neurone Disease Register

National Motor Neurone Disease Clinic, Beaumont Hospital Motor Neurone Disease Register The Irish Register of Motor Neurone Disease (MND) includes all known patients diagnosed with MND each year. It dates back to 1994 and it now has clinical information f ...

National Cleft Database

Dublin Cleft Centre (DCC) and members of the multidisciplinary team from Children's University Hospital Temple Street, Our Lady's Hospital Crumlin, St James Hospital, Cork University Hospital National Cleft Database The National Cleft Database m ...

National Haemophilia Register

National Centre for Hereditary Coagulation Disorders (NCHCD) National Haemophilia Register TheNational Haemophilis Register, is a national register for all patients with haemophilia and related bleeding and clotting disorders. Interfaced to St. James' ...

National Renal Transplant Registry

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Irish Childhood Diabetes National Register

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National Cancer Registry Ireland

National Cancer Registry Ireland (NCRI) Cancer Registry The Irish National Cancer Registry was set up in 1991 and began collecting comprehensive cancer information for the whole population of the Republic of Ireland in 1994. CRI collects cancer data for t ...

National Hepatitis C Database

Health Protection Surveillance Centre National Hepatitis C Database Hepatitis C infection is a major cause of liver disease and it is estimated that up to 20% of people with chronic infection will develop cirrhosis over a 20 to 25 year period.  Approximat ...

National Paediatric Mortality Register

Irish Sudden Infant Death Association Register on Sidden Infant Death Syndrome (SIDS) The National Paediatric Mortality Register was established by the Irish Sudden Infant Death Association (ISIDA) in 1992, is based in the Children’s University Hospital, ...

Northern Ireland Cancer Registry (NICR)

Centre for Public Heath, Queen's University Belfast Cancer registry The Northern Ireland Cancer Registry was re-established in May 1994 under an agreement between The Public Health Agency (PHA) and Queen's University of Belfast. The Registry is ...