ADPKD aneurysm risk study

People with autosomal dominant polycystic kidney disease (ADPKD) are known to be at high risk of intracranial aneurysms (IA).

IAs occur in about 3 in 100 of the general population but in between 10-12 in 100 of individuals with ADPKD. If you have an IA, it can rupture and cause Subarachnoid Haemorrhage (SAH), a devastating type of bleed on the brain which unfortunately results in disability or death in most patients.

However, very little is known about how frequently IAs rupture in ADPKD and whether this is the same as IAs in the general population or not. Without knowing what risks their IAs pose, it is impossible to make rational decisions for individual patients with ADPKD about whether to treat their aneurysms or not. 

National aneurysm risk study

Mr Diedrik Bulters, neurosurgeon at University Hospital Southampton, is leading a national study to validate an IA risk score. The study will include individuals with ADPKD to see if ADPKD fits the risk score or if it needs adaptation to include ADPKD and family history in the model.

Determining the most effective way to screen for and treat aneurysms is one of the Top 10 ADPKD research priorities. (Read more about the Top 10 ADPKD research priorities here.)

The PKD Charity has awarded a grant of £10,000 towards this important study into a complication of ADPKD which causes great concern and anxiety in many ADPKD families. 

Help us fund more much-needed PKD research

We urgently need new ways to treat polycystic kidney disease. PKD research is significantly underfunded compared with other chronic conditions but the burden of PKD on individual, family members and society is disproportionaely high.

You can help us accelerate research by fundraising or making a donation today.

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