The study is needed in the wake of dramatic improvements, since the 1970s, in survival rates for very small babies and those born extremely prematurely - before 28 weeks' gestation. Half of those weighing between 500g and 1,000g - less than a bag of sugar - now reach their first birthday.
Despite these improvements, 'very little is known about their long-term prognosis', the National Perinatal Epidemiology Unit, a Department of Health-funded unit which concentrates on care for the new-born, said. Vigilance is needed 'to ensure that the cost of increased survival is not an increased rate of handicap for the survivors'.
Dr Ann Johnson, a paediatrician at the unit, said existing hospital- based studies suggested that, while neonatal intensive care was producing increased numbers of normal survivors, there might be a 10 to 20 per cent risk of the very premature child surviving handicapped in one way or another. National figures were needed to provide a more accurate picture, to measure how it was changing over time, and to establish how far disabilities were related to the intensive care or had already existed when the child was born.
'Trends over time in the frequency of impairment and disability among survivors remain unclear,' she added.
Much of the data to provide an on-going study exists in the child health surveillance programmes, under which almost all children are assessed around their second birthday. However, the information is not recorded or collated in a consistent way, or available nationally for comparison.
The Department of Health should now organise that, the unit argues. 'We need this information to inform practice,' Dr Johnson said. 'We are not at all implying that if high levels of disability are found that would be a reason for not providing intensive care. It is much more that the care provided would need to be looked at and refined.'Reuse content