Trials
We are awaiting the results of these trials.
Octreotide
A completed Mayo Octreotide clinical trial from phase I (checking for dose, safety and side effects of once monthly injections of long acting octreotide) has been extended for two additional years to a four year clinical trial of the 42 original participants. The Mayo is considering a third octreotide trial for individuals with PLD who have never taken octreotide.
A completed Italian Octreotide clinical trial with Somatostatin has concluded that Octreotide is beneficial for diminishing kidney cysts. In progress is a three year follow up trial at the Mario Negri Institute for Pharmacological Research, Bergamo, Italy.
Lanreotide
A clinical trial from the Netherlands uses Lanreotide. There is a study in Belgium, and in Italy. We are very hopeful this drug will prove useful for the treatment of PLD Polycystic Liver Disease.
Sirolimus
Sirolimus is a drug given for transplants. The Mayo Clinic in the USA is looking at cystic livers with individuals already taking sirolimus. A paper written by Dr Torres shows that sirolimus decreases liver cyst growth. Rapamune/sirolimus has some very serious side effects. A prospective review of PKD transplant patients showed a 23% decrease in kidney cysts on a very small limited number of patients (I think it was 4). Rapamune is not to be taken lightly. However if one has had an organ transplant, and currently taking it, Rapamune sirolimus might be useful as it also reduces liver cysts.
ADPLD Genetic Study
This study is for individuals with only liver cysts, without any kidney cysts. Without kidney cysts and only liver cysts, it is likely that this is ADPLD, autosomal dominant polycystic liver disease. Your participation would help researchers looking at polycystic liver disease. The researchers for the ADPLD study are Dr. Peter Harris, Dr Torres and Dr. Somlo. This requires a donation of a test tube of your blood. A kit can be mailed to you and you can mail it back in a pre-paid envelope.
