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Dutch grant awarded for a multinational trial in women with polycystic liver disease (PLD)

Great news for women suffering from polycystic liver disease or PLD! The Dutch Expertise Center of polycystic diseases from the University Medical Center of Groningen (the Netherlands) received a grant worth 800.000E to set up a trial into the effect of anti-estrogenic therapy on PLD in women.

Most patients suffering from autosomal dominant polycystic kidney disease (ADPKD) have at least some liver cysts, but a small number of those suffering from ADPKD has many liver cysts which cause large liver volumes. Liver function is not affected by the disease, but if liver volume grows large, this can result in many somatic complaints and also psychological complaints, due to the enlarged abdominal volume. PLD can also occur as a separate disease – without cystic kidneys – but this is rarer. Approximately 8 in 10 (80%) of those suffering from this severe form of PLD are women, and it is thought that female hormones, like estrogen or progesterone, play an important role in the disease.

In the new study, the “AGAINST-PLD trial” female PLD patients will be treated with ‘leuprorelin’, a medication that inhibits the production of all female hormones. Leuproreline is currently used for several other diseases, mostly gynecological, but has never been tried in PLD. The researchers will assess whether this medication has effect on the liver growth and the complaints caused by the large livers. The study will start in the first half of 2021. Centers in Groningen, Nijmegen (the Netherlands), Cologne (Germany), Leuven (Belgium) and Barcelona (Spain) will participate and together include 36 patients.

We hope that this research can make a step forward in the treatment of PLD, a rare but disabling disease.

The research is funded by ZonMw in the Netherlands, the national funding organisation;

“Goed gebruik geneesmiddelen” grant from ZonMW, number 10140261910001.

Tess Harris