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British Paediatric Surveillance Unit
The British Paediatric Surveillance Unit (BPSU) was set up by Royal College of Paediatrics and Child Health, Health Protection Agency and the Institute of Child Health, London in 1986 to undertake active surveillance of rare paediatric disorders.

The International Network of Paediatric Surveillance Units
The International Network of Paediatric Surveillance Units (INoPSU) is a collaborative organisation. Established in 1998, it currently joins 14 diverse countries with a common purpose - to conduct surveillance of uncommon conditions of childhood.

Eurosurveillance is a leading independent European scientific journal devoted to the epidemiology, surveillance, prevention and control of communicable diseases. Published by the European Centre for Disease Prevention and Control (ECDC).

National Assembly for Wales: Research and Development
The National Institute for Social Care and Health Research (NISCHR) develops, in consultation with partners, policy on research and development (R&D) to reflect the health and social care priorities of the Welsh Assembly Government

Research Ethics Committee in Wales
There are currently eight Local Research Ethics Committees (LREC) and one Multi-Centre Research Ethics Committee (MREC) within Wales whose purpose is to protect the dignity, rights and welfare of people participating in research in the NHS.

National Research Ethics Service
The National Research Ethics Service was launched on 1 April 2007 superseding the Central Office of Research Ethics Committees.

Children and Young People's Research Network
CYPRN for Wales is a registered research group funded by NISCHR.  The network supports and promotes high quality research in children and young people's health.  It is based in the Department of Child Health, School of Medicine, Biology, Health & Life Sciences, Cardiff University, CARDIFF CF14 4XN, (029) 2074 4939

Congenital Anomaly Register and Information Service (CARIS)
Caris is the Congenital Anomaly Register & Information Service for Wales. CARIS is based at Singleton Hospital, Swansea and is funded through Public Health Wales.

Cardiff University - Department of Child Health
The Department of Child Health includes a strong research base in community paediatrics, neonatal/paediatric respiratory medicine, paediatric endocrinology and palliative care. Based at the University Hospital of Wales, Cardiff CF14 4XN.

University of Cardiff
The University of Cardiff

The Royal College of Paediatrics & Child Health is a charity established by Royal Charter. It is responsible for the training and examination of paediatricians in the UK. The RCPCH has over 11,000 members both in the UK and overseas.

Lesotho-Wales Health Link
The link between Lesotho and Wales is unique as it involves two nations. These have been built up over 22 years.One of the aims of this relationship is to provide support to our colleagues in Lesotho who deliver healthcare under difficult circumstances.

Core-info Welsh Child Protection Systematic Review Group
A series of systematic reviews defining the evidence base for the recognition and investigation of physical child abuse and neglect; a collaboration between the NSPCC, The Royal College of Paediatrics and Child Health, Wales Office of Research and Development and Department of Child Health, Wales School of Medicine, Cardiff University.
This site has a designated page for paediatrics now.  OrphaNews Europe is the freely available, twice-monthly electronic newsletter of the European Union Committee of Experts on Rare Diseases (formerly the EC Rare Diseases Task Force).
OrphaNews Europe reports the latest developments in the field of rare diseases and orphan drugs, including new syndromes, new genes, basic and clinical research, national and international policy, disease surveillance, clinical trial updates, orphan drug approvals, funding opportunities, ethical, social and legal issues, news from the patient associations, upcoming events, and new publications.   

This is a new site for neonatal cholestatic disorders. They start with the biliary atresia registry first, which can be used from now on. The purposes of the registries are diverse: they offer the option to create a center-bound registry, including regularly follow-ups which can be used for individual statistics and evaluation.


TAIN survey - now live 

Genetic Alliance UK's research team are conducting research for the treatment of adrenal insufficiency in neonates (TAIN) project - funded by the European Commission. Their survey is now live in English, German and Dutch.