The most common type of birth defect is still not receiving enough attention in clinical trials

Adults are the ones paying, always and everywhere. This could be one of the reasons why not more scientists are researching infant diseases and conditions. A new study led by the University of Birmingham revealed that less than 1 % of UK children born with congenital heart disease are enrolled in clinical trials.

Infants with congenital heart disease could benefit from more clinical trials. Image credit: WiLPrZ via Wikimedia(CC BY-SA 2.0)

Congenital heart disease is the most common type of birth defect. Scientists analysed all 333 clinical trials published world-wide between 1st January 2000 and 31st August 2016. This number in itself is very small, however they also found that only 10 of three clinical trials were conducted in UK and none of them were significant in terms of introduction of new treatments or changing the guidelines. While 70 % of children with cancer are enrolled in these significant trials, only 1 % of infants who underwent heart surgery were participating in clinical trials. This can have a tremendous effect in terms of how quickly new medicine is introduced into the market.

And it is not like this condition is statistically insignificant. Many children die because of the congenital heart disease. Current medicine allows some of the survivors to grow up, however, hundreds of them die even before the school age. Scientists are speculating that the problem is that there are many types of the congenital heart disease and thus it is more difficult to gather a good group for a clinical trial. The current treatment typically includes a surgery, which has come a long way in the past 20 years. However, further clinical trials could push congenital heart disease to the new age.

Scientists are convinced that a bigger number of clinical trials could help improving outcomes of the surgery. Ultimately, this could increase the number of survivors of the congenital heart disease, but only if the doctors are willing to conduct these trials. Medical doctor Nilesh Samani, who was involved in the study, said: “For many children with congenital heart disease, the only treatment available is surgery. It can be a difficult choice for parents to agree to their child participating in research. However, the only way we can improve the range and quality of treatments for these children is through clinical trials”. Therefore, both parents and doctors should be more willing to start significant clinical trials.

It is difficult to say why infants receive so little attention in terms of clinical trials. But it is hard not to think that these researches are not profitable enough. However, hopefully researches like this will draw more attention to the problem and the situation will start changing.


Source: University of Birmingham

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