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Report of the Consultation for a National Rare Disease Plan for Ireland

3.7.2014 Report of the Consultation for a National Rare Disease Plan for Ireland This report presents findings from the National Consultation on Rare Disease overseen by the Institute of Public Health in Ireland on behalf of the Department of Health to in ...

National Centre for Medical Genetics 5 Year Report 2007- 2011

National Centre for Medical Genetics (NCMG) Genetics This comprehensive report provides an insight into the specialist work carried out in the National Centre for Medical Genetics (NCMG) between 2007 and 2011. The data was compiled by nominated staff memb ...

Genetic and Rare Disorders Organisation (GRDO)

Genetic and Rare Disorders Organisation (GRDO) Genetic disorder, Rare disorders The Genetic and Rare Disorders Organisation (GRDO) is a non governmental organisation acting as a national alliance for voluntary groups representing the views and concerns of ...

Health Protection Surveillance Centre

Health Protection Surveillance Centre (HPSC) Communicable diseases The Health Protection Surveillance Centre (HPSC) is Ireland's specialist agency for the surveillance of communicable diseases. HPSC is part of the Health Service Executive and works i ...

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 ...

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 ...

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 ...

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 ...

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 ...