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Rare Diseases

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 ...

National Alpha-1 Antitrypsin Deficiency Registry

Alpha One Foundation National Alpha-1 Patient Registry The national alpha-1 antitrypsin deficiency (Alpha-1) registry was established in 2007 to collect information on Alpha-1 individuals throughout Ireland. The registry is a confidential database that re ...

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 ...

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, ...

National Physical and Sensory Disability Database (NPSDD)

Health Research Board (HRB) BLIND PEOPLE, BLINDNESS, DEAF AND BLIND, PHYSICAL DISABILITY, SENSORY FUNCTION The National Physical and Sensory Disability Database (NPSDD) is a set of information that outlines the specialised health services currently used o ...

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 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 ...

Irish Childhood Diabetes National Register

The Adelaide and Meath Hospital (AMNCH) incorporating the National Children’s Hospital, Tallaght; Trinity Centre for Health Sciences Childhood Type 1 Diabetes Register A prospective national diabetes register was commenced on Jan 1st 2008 to monitor epide ...

Cystic Fibrosis Registry of Ireland

Cystic Fibrosis Registry of Ireland Cystic fibrosis Register The Cystic Fibrosis Registry of Ireland (CFRI) has been in operation since 2001. The CFRI was established to keep relevant medical records of each patient with cystic fibrosis in a central compu ...