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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 ...

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 ...

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 ...

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 ...

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 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 ...

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 ...

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 ...

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 ...

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 ...

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 ...

Irish Heart & Lung Transplant Programme Database

National Centre for Cardiothoracic Surgery, Mater Misericordiae University Hospital, Dublin Heart, Lung, Transplant, Database Since April 1999 the Department of Health have funded a heart/lung and lung transplant programme based at the Mater Hospital in D ...

Health Service Executive Newborn Hearing Screening Programme

Health Service Executive (HSE) Screening, Hearing, Newborn baby In the South and South East of Ireland (Cork University Maternity Hospital, Wexford General and Waterford Regional Hospitals) parents of all babies born are offered a hearing screen for their ...

National Centre for Inherited Metabolic Disorders

National Centre for Inherited Metabolic Disorders Screening, Inherited Disorder, Metabolic Disorders, Disability The National Centre for Inherited Metabolic Disorders is located at the Children's University Hospital, Temple St. It is the tertiary car ...

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 ...

National Renal Transplant Registry

Beaumont Hospital Renal transplantation registry This renal database is used to assess graft and patient survival, monitor factors affecting outcome and performance.   Patient details collected include demographic details, type of renal disease, and sourc ...

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 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 ...

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 ...

Irish Epilepsy and Pregnancy Register

Beaumont Hospital Epilepsy Research Group & Royal College of Surgeons in Ireland (RSCI) DRUG, EPILEPSY, PREGNANCY The Irish Epilepsy and Pregnancy Register was set up in 2001 for pregnant women with epilepsy in Ireland. The aim of this Register is to ...