Some 40 years after Ireland became the first country in the world to have a national screening programme, Dublin’s Temple Street Children’s University Hospital has developed an online support module for the programme aimed at supporting care providers and clients.
The websites are designed to support healthcare professionals and parents in the search for, and treatment of, inherited metabolic disorders and also to advise parents and health professionals on how to minimise the risk of cot death or Sudden Infant Death Syndrome (SIDS).
“The National Newborn Screening Programme site is aimed principally at public health nurses and midwives, who are key partners in the collection of samples,” explained Professor Philip Mayne, director of the National Newborn Screening Laboratory. “It provides a method of communication and a source of information on all aspects of the National Screening Programme.”
“While everyone appreciates the value of screening, the relative rarity of the disorders we screen for means that awareness levels are low, both in terms of detection techniques and treatment. We hope that this site becomes a valuable tool in making the right information available to health professionals around the country.”
The site www.nnsp.ie has detailed instructions on how to conduct a ‘heel prick test’ as well as outlining the syndromes and disorders that are tested for. These include Phenylketonuria (PKU), Maple Syrup Urine Disease, Homocystinuria, Galactosaemia and Congenital Hypothyroidism. A two-year pilot programme to screen for Congenital Toxoplasmosis began in July, 2005 and it is hoped that the screening programme will be expanded to cover at least 12 additional disorders in the near future. A request to screen for Cystic Fibrosis is with the Department of Health and Children at the moment.
The second website Temple Street Children’s University Hospital launched this week — the National Centre for Inherited Metabolic Disorders website at www.ncimd.ie — is a natural complement to the National Screening Programme as it is the tertiary referral centre for the investigation and treatment of people suspected of having such disorders and conditions. Like the screening programme’s website, the focus is on health professionals and the site provides the latest news in terms of research as well as offering courses to interested nurses and doctors in the treatment and care of children with inherited metabolic disorders.
Temple Street Children’s University Hospital also announced the establishment of the online SIDS register — www.sidsireland.ie — which is slightly more consumer focused. The stated objectives include supporting bereaved parents, educating the public and healthcare professionals about SIDS and ways to reduce the risk of cot death, and collecting as much data as possible to support further research into SIDS and its causes. Parents can visit the site and review the FAQ section as well as some basic “do’s and don’ts” in the info and advice section. For health professionals, the latest research on SIDS is posted, as are news items affecting the field and relevant study/research links.
“The websites have been live since the end of February and we are starting to see some traffic, particularly on the SIDS site,” explained David Wall, ICT manager at Temple Street Children’s University Hospital. “We expect usage to sharply increase as the relevant groups become aware that the resources are in place to support their work.”
By John Kennedy