Prolonged Effects of Assisted reproductive technologies on health of women and their children: a Record Linkage study for England (PEARL)

Lay summary

In general, most children born after the use of fertility treatment (such as IVF or ICSI) are healthy. However, there is a small increased risk in the number of children who are born early, have a low birthweight, and who have health or developmental problems. We know less about the health of children born after fertility treatment as they grow up, as long-term follow-up studies are costly and time consuming. As a result, many studies are not big enough to detect small differences between the groups – which is important because the effects of fertility treatment on health may be subtle. We also need more evidence about the long-term health of women who have had fertility treatment.

PEARL is a large study of women and children in England. The study has three main aims; these are:

1. To find out the effect of fertility problems and fertility treatment on the health and development of children from birth to adolescence
2. To look at the impact of successful fertility treatment on the health and wellbeing of women
3. To estimate the additional costs to the National Health Service (if any) of caring for women and their children after successful fertility treatment

PEARL uses anonymous health information about over 500,000 mother-baby pairs (babies born from 1992-2018) who are included in a national primary care dataset (Clinical Practice Research Datalink). This information has been linked to details about women’s fertility treatment held in the HFEA register, so that the research team could look at their wellbeing and the health of children conceived through fertility treatment, and compare to those who did not have fertility treatment. The research is ongoing, and have published some of the findings in journal articles and presented them at academic conferences.

Public benefit statement

This research will provide more evidence about the long-term effects of fertility treatment, such as IVF or ICSI, on the health of women and their children. This will benefit individuals and couples experiencing infertility to make a more informed decision about fertility treatment. It will also benefit the clinicians caring for patients, by giving them more information to help explain the potential implications of treatment. In addition, the wider research community benefit from an increase in robust evidence from a large national linked dataset. The NHS, policymakers and those planning services will benefit from the information provided about the potential costs of health care used by children born after fertility treatment.

Data linkages

• Clinical Practice Research Datalink (CPRD)
• Hospital Episode Statistics Admitted Patient Care
• Indices of Multiple Deprivation

Scientific publications

• Hua X, Rivero-Arias O, Quigley MA, Kurinczuk JJ, Carson C. (2023) Long-term healthcare utilization and costs of babies born after assisted reproductive technologies (ART): a record linkage study with 10-years' follow-up in England. Human Reproduction, 38(12):2507-2515.
• Carson C, Hinton L, Kurinczuk JJ, Quigley MA. (2019) ‘I haven’t met them, I don’t have any trust in them. It just feels like a big unknown’: a qualitative study exploring the determinants of consent to use Human Fertilisation and Embryology Authority registry data in research. BMJ Open 2019;9:e026469.