Professor Jean Golding, who has been announced as one of the National Institute for Health Research's (NIHR) seven NHS70 research legends, tells the story of developing Children of the 90s, a unique cohort study spanning three generations in the Bristol area. This blog is part of the Bristol Firsts series, celebrating Bristol-based innovations in the NHS’s 70th year. If you have an idea for a Bristol Firsts blog, get in touch with Zoe Trinder-Widdess on firstname.lastname@example.org.
I first came to Bristol in 1980 to work with Neville Butler, who was at that time the Professor of Child Health at the Children’s Hospital in Bristol. As well as being a brilliant, if somewhat eccentric, clinician he was passionate about research, especially epidemiology, which was my forte.
We worked together on two of the innovative national birth cohorts, studies of children born in Britain in one week of 1958, and then again in one week of 1970. These were fascinating glimpses into the ways in which the development of children varied across the country as they grew up. The more I worked on these studies, the more I wanted to ask questions that could not be answered with the limited data they had collected. I wanted to find out details of the backgrounds of the parents, what had happened during pregnancy, as well as to measure and examine the babies and children as they grew.
Fortuitously, two separate events transpired which were vital to my future career. Firstly, in 1985 I was invited by the World Health Organisation to a meeting in Moscow to discuss the possibility of carrying out cohort studies in Europe, and this enabled me to expand on the ideas that I had for a future survey, not only in the UK but also in Europe. Secondly, I met Marcus Pembrey, another brilliant clinician, who was keen to collaborate as he thought this could be a unique (at the time) opportunity to collect genetic material from a sample population. Discussions followed with international experts, as to the best way of collecting information from various diverse regions across the continent, and out of this Children of the 90s was born.
It took five years to design and test the study before we could start (in 1990). This was time well spent. I had an energetic five years travelling throughout the UK, Europe and America, gleaning ideas and developing study methods. In parallel I was developing a fairly thick skin in order to counteract the criticisms that were thrown at the plans for the study. These particularly came from the scientific community. At that time it was thought more important to concentrate on one topic (such as asthma) and just collect information related to that. It has since been proven that I was right to insist on a broad-brush approach. Nevertheless, the criticisms were strong, particularly from major organisations that we had hoped would provide the funds needed to undertake such a study.
Against all odds we managed to cobble together enough funds to start the study: the Avon Longitudinal Survey of Parents and Children or ALSPAC. This is the name by which it is known in scientific circles, but locally it is known by its friendlier name Children of the 90s, with a logo comprising a hot air balloon as a symbol of Bristol and its surrounding area. At that time two of the current major funders, the Medical Research Council and the Wellcome Trust, were not interested in providing the basic core funding of the study which we desperately needed. We did manage for a while with money from a variety of sources including the Department of the Environment (who were interested in air pollution in the home), the Ministry of Agriculture, Fisheries and Foods (MAFF – who were interested in the diets of mothers and children), and charities such as the National Asthma Campaign (now Asthma UK), as well as from the USA (the National Institutes of Health and the Centers for Disease Control and Prevention).
There was, however, a crisis looming. The most important time of the study was during pregnancy and the first year of life when we needed to collect as much data as possible, using questionnaires to each parent, mother’s blood and urine samples during pregnancy and, at delivery, the placenta itself and blood from the baby’s umbilical cord. This involved frenetic activity from what turned out to be the most wonderful dedicated staff. They were devoted to the concept of the study, came from diverse backgrounds, and had different but important expertises. Because we had so little consistent funding, many of these members of staff were given contracts one month at a time, with a promise from me that it would all turn out well! I don’t know what I was thinking of – as I was aware that we were shortly to go into debt. I spent much time grovelling and trying to persuade the University of Bristol hierarchy that this was an endeavour that was worth supporting, and that the study would be able to repay the University eventually.
Fortunately the Vice-Chancellor, Deputy Vice-Chancellor and Finance Director agreed, although they made sure that we continued to raise as much money as possible. There was no suggestion of our being given a blank cheque. Indeed it was not until the year 2000 that we were finally awarded funds from the Wellcome Trust and the Medical Research Council to fund the basic essentials to keep the study going. Their commitments have allowed the study to continue to follow the children ever since. Interestingly all the early criticisms of the study have now turned into plaudits, and Children of the 90s is seen as a world-leader. Although this is to some extent due to the organisations that contributed funds, it could not have occurred without the dedicated staff, but it was especially fortunate that the study parents whom we first enrolled during pregnancy were clear about the importance of the study. Their cooperation has been amazing, and we are fortunate that their offspring have joined in and contributed so much over the years.