Screenings for people with polycystic kidney disease

The main guidance

Kidney Disease: Improving Global Outcomes (KDIGO) published its first clinical practice guideline on ADPKD in 2025. The full guideline is not open to read, so this page cites it through open national commentaries that quote and discuss its recommendations: from the Canadian Society of Nephrology, the European Renal Association (ERA) Working Group Genes & Kidney, and the CARI Guidelines group in Australia and New Zealand, plus a summary of its advice for children. (CSN on KDIGO 2025)(ERA on KDIGO 2025)(CARI on KDIGO 2025)(KDIGO 2025 pediatric summary) In the UK, the NHS describes the tests used. (NHS diagnosis)

Checks the guidance lists for people with ADPKD

Blood pressure

High blood pressure is one of the problems ADPKD can cause, and a GP measures it as part of the diagnosis. (NHS)(NHS diagnosis) For children with or at risk of ADPKD, the KDIGO 2025 guidance says blood pressure should be checked every year from birth, and strongly recommends 24-hour ambulatory blood pressure monitoring from age 5 to find masked and night-time high blood pressure. (KDIGO 2025 pediatric summary) The Canadian commentary describes this as annual 24-hour ambulatory testing after age 5. (CSN on KDIGO 2025) For adults, KDIGO relies on standardized office measurement; the Canadian and CARI commentaries add clear instructions for home monitoring and note home readings as a practical alternative to ambulatory monitoring. (CSN on KDIGO 2025)(CARI on KDIGO 2025) The USPSTF recommends blood pressure screening for all adults 18 and older. (USPSTF blood pressure, 2021) See blood pressure readings: what they mean and a child's blood pressure check.

Kidney function and kidney imaging

The NHS lists urine tests for blood or protein, blood tests including a GFR test, and ultrasound, CT or MRI scans to look for cysts in the kidneys and liver, and says kidney function is monitored with blood tests at varying intervals. (NHS diagnosis)(NHS treatment) MRI or CT imaging helps with diagnosis and with estimating risk, and KDIGO recommends the Mayo imaging classification for people with ADPKD; the Canadian commentary notes that CT without contrast is acceptable for this. (CSN on KDIGO 2025) For children, KDIGO recommends monitoring guided by blood pressure, kidney function and new symptoms rather than routine scans at fixed intervals. (KDIGO 2025 pediatric summary) See kidney test results and screenings if you have kidney disease.

Brain aneurysm screening

People with ADPKD have a 4 to 5 times higher risk of brain (intracranial) aneurysm than the general population, with a prevalence of about 12.9 percent, and the median age at rupture is about 10 years younger (41 versus 52 years). (ERA on KDIGO 2025) KDIGO recommends screening for people with ADPKD who have had a subarachnoid hemorrhage or have a family history of intracranial aneurysm, subarachnoid hemorrhage or unexplained sudden death, if they would be eligible for treatment and have a reasonable life expectancy. (CSN on KDIGO 2025) It says screening should also be discussed for people whose ADPKD is new in the family, whose family history is unknown or who have few affected relatives, and that in women in these groups screening should come before pregnancy planning. Its preferred test is time-of-flight MRA without contrast, and after a negative scan in someone at high risk, rescreening is individualized, possibly every 5 to 10 years. (ERA on KDIGO 2025) The ERA group adds that screening should start after age 18, as rupture is exceedingly rare in children. (ERA on KDIGO 2025) The NHS says people with ADPKD and a family history of subarachnoid hemorrhage are usually offered an MRA scan, with further scans every 1 to 5 years if no or only small aneurysms are found. (NHS complications) MedlinePlus says people with a personal or family history of PKD who have headaches should be tested to find out if aneurysms are the cause. (MedlinePlus)

Aorta and liver

KDIGO says routine screening of large arteries outside the brain has no role for people with ADPKD and no family history of vascular aneurysms or dissections, but that people with ADPKD and their first-degree relatives who have a family history of aortic root or chest aortic aneurysm should be screened for aortic aneurysms. (ERA on KDIGO 2025) See screenings for people with Marfan syndrome for what aorta imaging involves. Liver cysts are common and usually do not affect liver function, though they can become infected or cause symptoms. (NHS complications) The ultrasound used for diagnosis can show cysts in the liver as well as the kidneys. (NHS diagnosis) The pediatric summary notes that adult guidance discourages early screening for liver cysts or brain aneurysms unless there are risk factors or a family history. (KDIGO 2025 pediatric summary) See liver function test results.

Testing for relatives

KDIGO recommends ultrasound as the first screening test for adults at risk of ADPKD. The Canadian commentary stresses counselling before the scan, since finding kidney cysts may affect life, disability or critical illness insurance. (CSN on KDIGO 2025) CT or MRI is used when ultrasound results are unclear. (CARI on KDIGO 2025) Genetic testing is particularly helpful when imaging is equivocal, when the family history is negative or unknown, for a relative being assessed as a living kidney donor, and in families where the disease varies a lot, including when it starts in childhood. (CSN on KDIGO 2025) The NHS calls screening of at-risk relatives a controversial issue and suggests discussing the pros and cons first; it notes that scans can miss very small cysts in younger people and may need repeating later in life, and that genetic testing may be negative in 10 percent of people with ADPKD. (NHS diagnosis) For children without symptoms, KDIGO does not recommend routine ultrasound screening; testing is considered case by case. (CARI on KDIGO 2025) See family history and screening and how to collect your family health history.

When to contact a provider

Routine age-based screening

ADPKD checks are added to, not instead of, the routine screenings for your age and sex; see screenings by age and gender and kidney disease screening.

Where they differ:

• Who gets a brain aneurysm scan. KDIGO recommends it for people with a past brain bleed or a family history; the Canadian commentary calls that the minimum and says people without such a history may still benefit after shared decision-making. (CSN on KDIGO 2025) CARI lists high-risk jobs such as pilots, major surgery and significant anxiety as further reasons, (CARI on KDIGO 2025) while the ERA group says there is no supporting data for screening before major elective surgery. (ERA on KDIGO 2025)
• Repeat scans. KDIGO suggests individualized rescreening, possibly every 5 to 10 years, after a negative scan in someone at high risk; (ERA on KDIGO 2025) the NHS describes further scans every 1 to 5 years when no or only small aneurysms are found. (NHS complications)
• Children. KDIGO advises against routine screening for problems outside the kidneys in children without symptoms; the Canadian commentary finds this too prescriptive, though it also does not recommend routine aneurysm screening in children. (CSN on KDIGO 2025)
• Screening relatives. KDIGO recommends ultrasound first for adults at risk, after counselling; (CSN on KDIGO 2025) the NHS calls screening at-risk relatives controversial and says genetic tests are not routinely done. (NHS diagnosis)

Your doctor decides what your result means for you.

Questions people ask

Should everyone with ADPKD be screened for brain aneurysms?

Not in the KDIGO 2025 guideline. It recommends screening for people with ADPKD who have had a bleed on the brain or who have a family history of brain aneurysm, bleeding on the brain or unexplained sudden death, if they would be eligible for treatment and have a reasonable life expectancy. The Canadian commentary calls this the minimum and says others may still benefit after a shared decision. (CSN on KDIGO 2025) (ERA on KDIGO 2025)

How often is a brain aneurysm scan repeated?

For people at high risk whose scan is negative, KDIGO says the timing of rescreening should be individualized, possibly every 5 to 10 years. The NHS says that if no aneurysms or only small ones are found, further scans are offered at intervals of 1 to 5 years. (ERA on KDIGO 2025) (NHS complications)

What scan is used to look for brain aneurysms?

KDIGO prefers time-of-flight magnetic resonance angiography (MRA) without contrast dye, with high-resolution CT angiography as an alternative. (CARI on KDIGO 2025) (ERA on KDIGO 2025)

Should relatives of someone with ADPKD be tested?

KDIGO recommends ultrasound as the first screening test for adults at risk, with counselling first about what a result may mean, including for insurance. Genetic testing is helpful when imaging is unclear, the family history is negative or unknown, or a relative is being assessed as a kidney donor. (CSN on KDIGO 2025) (CARI on KDIGO 2025)

Are children of a parent with ADPKD checked?

KDIGO does not recommend routine ultrasound screening of children without symptoms, but says blood pressure should be checked every year from birth, with 24-hour ambulatory blood pressure monitoring from age 5. (CARI on KDIGO 2025) (KDIGO 2025 pediatric summary)

Related

• Kidney disease screening
• Kidney test results
• Screenings if you have kidney disease
• Blood pressure readings: what they mean
• A child's blood pressure check
• Screenings for people with Marfan syndrome
• Family history and screening
• Screenings by age and gender
• Questions to ask your doctor