A new list of prioritised research for infertility topics shines a light on the areas where a real difference can be made. For too long people confronting infertility have been overlooked in those decisions, writes Cindy Farquhar, fertility expert and co-chair of a new international report
In this digital age, with everything seeming to happen faster and faster, one thing seems to have become slower and slower: having a baby. Infertility means not conceiving after one year of trying. Imagine you are a woman in that position – going through 12 menstrual cycles and each period heralding disappointment. This is surprisingly common. Current research suggests it affects one in six couples trying to have a baby and appears to be more common as couples delay trying to have a baby until into their 30s. However, the age of the woman is not necessarily the main reason for the delay – it may be just that the problem causing the infertility is only revealed once a woman has started trying.
It comes as a shock to many couples seeking to have a baby that treatments such as IVF are not universally successful. For a woman aged 35 years old, one cycle of treatment with IVF using all the available embryos (fresh and frozen) is only likely to be successful about one third of the time. Some women don’t respond to the drugs. Others, more concerningly, over-respond to the drugs, which prompt sickness.
Even if eggs are successfully collected, in some women the eggs will not fertilise and there will be no embryo to transfer. Finally, even if there are embryos transferred then pregnancies may not result. The reasons for embryos not implanting are complex and may include an issue within the embryo or something with the endometrium. And then there is a miscarriage risk which is usually about 15% of IVF pregnancies. There are questions, too, about how long a couple with no obvious explanation for their infertility should continue to try and have a baby before they decide to try treatment.
There’s a lot for would-be parents to get their heads around. And there is no lack of research. Each year thousands of new studies on infertility are published. There are many researchers around the world seeking improvements in the diagnosis and treatment of infertile couples. That may sound great but there has been a lack of coordination of topics or activities. As a result we are drowning in research that is singularly lacking in impact.
Until our current prioritisation project few researchers had involved people dealing with infertility in their decisions to research topics. Crazy as it seems, most researchers select their topic according to what they think will be funded, and funding bodies do not usually require any prioritisation to make funding decisions. As a result there has been no agreement about what the most important topics are. This is a mismatch that is not uncommon in medical research – patients may want an entirely topics for researchers to focus on. This lack of external consultation may result in wasted efforts by researchers.
In the second half of last year we surveyed 700 researchers, clinicians, patient organisations, and people confronting infertility about what they thought the important questions are for infertility.
They suggested a staggering 423 different research questions about infertility. We have now narrowed these down to a top ten for four different categories so really we have a top 40 questions. We did this at an all day workshop at the University of Auckland last November. For me, it was a great process as one third of the people in the room were patients or representatives of patient organisations. We were asked to rank the questions and the discussion were at times really challenging as researchers listened to different points of view from patients.
Our hope is that all future research in this field of infertility will consider this list and seek to fill in the gaps in our knowledge and to improve the outcomes of treatment. We also hope that funders will use the information on this list when making decisions about future funding. We need to stop producing research that is not helpful and instead focus on topics that will make the difference to those affected.
Cindy Farquhar is postgraduate professor of obstetrics and gynaecology in the Department of Obstetrics and Gynaecology at the University of Auckland
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