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| GSG NEWS - DIET - Register | ||||||||||||||||||||||
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What is a register? A register is essentially a list of patients with a certain disease or condition which is held centrally. Anyone holding a register of patients has to register under the Data Protection Act and operate with the strictest confidentiality. What is the purpose of a register? For very rare diseases, registers are one of the only ways that research into the disease can be carried out. This is because patients are usually spread out throughout the country under the care of local doctors who never see enough patients with the same disease to be able to carry out research. Also, for many of these conditions, research needs to be carried out over a long period of time before any useful results can emerge. Holding a register means that that there is information about a large number of patients with the same condition. Why was the UK Galactosaemia register set up? Galactosaemia is a very rare inherited disease and only 10-20 children are born in the UK with the condition every year. Because it is so uncommon a register will help collect information about patients born with galactosaemia throughout the UK. Between 1994-2002, a galactosaemia register was run, collecting a large amount of information on all children born between those years. The funding for this ceased in 2002 and data has not been collected since. A new simpler register is now being run that is collecting data on those born with galactosaemia. The Galactosaemia Support Group is funding the register. The Medical Advisory Panel of the GSG will supervise the register. This data will be held centrally, and if a research worker wishes to conduct research into galactosaemia, the database will provide a source of information about patients in the UK. However, being included in the register does not automatically mean that a child has to participate in research into galactosaemia, although you may receive information from time to time about research projects. What information will be collected? The information collected will be name, address, NHS number, sex, date of birth, name and address of paediatrician, and date of diagnosis. How will the register work? When a baby is born with suspected galactosaemia a blood test is sent to the laboratory for further tests. If the test is positive the laboratory notifies the Paediatrician. He/she will ask the parents if they are willing to receive information on the register. If they agree they will be given or sent an Information Pack about the register with a consent form. If consent is not given, no details on the child will be held on the register. If consent is given then the parents are asked to sign the green consent form, and also complete the yellow information questionnaire, and then return both forms in the SAE provided to the register co-ordinator. If the yellow questionnaire is not completed then the doctor will be asked to do this later. All data will be held centrally, and if a research worker wishes to contact some individuals to conduct research on galactosaemia this may be possible using the register. However, the research will need to be first approved by the Medical Advisory Panel of the GSG and a Research Ethics Committee. The register co-ordinator will then contact parents/children listed on the register to ask if they wish to receive further details about the research project, before they are finally contacted by the research worker. How will this help children with galactosaemia? The main purpose is to hold contact details for those born with galactosaemia. This makes it easier to identify and recruit patients for research in galactosaemia. At present there is no such register, and no way of even knowing exactly how many are born in the UK with galactosaemia. Can older children with galactosaemia join the register? As soon as the first phase of the register is established then it will be possible for older patients to join. Some information has been collected already in a register on those born between the years 1994-2002, and it is planned to transfer this information over to the new register. Others will also be able to join. For further information contact Sue Bevington. To download the register forms, click here |
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