This web page is for people offered tests for autosomal dominant polycystic kidney disease (ADPKD). It’s also for people who are thinking of getting tested because they have a relative with ADPKD. We describe the tests you’re likely to have.

Contents

• To check whether you have ADPKD, you might be offered a scan of your abdomen (tummy) or a genetic test.
• Using a scan, a radiologist can see fluid-filled balls (cysts) in the kidneys caused by ADPKD.
• A genetics specialist can use a genetic test to look for genes that can cause ADPKD. These include the PKD1 or PKD2 gene.
• Talk to a specialist about the pros and cons of testing before going ahead.
• If you’re diagnosed with ADPKD, you may feel a range of emotions. Many people feel shocked or overwhelmed at first.
• Specialists will chat you through what the diagnosis means. They’ll explain any tests or treatments you can have now or in the future.

Call our helpline on 0300 111 1234 for support, practical advice and information. You can also contact us via Facebook messenger or email [email protected].

To check for ADPKD your doctor might offer you a scan of your abdomen (tummy) or a genetic test.

You should talk to a specialist before having either test. They could, for example, be a specialist in the kidneys (a nephrologist) or in genetics (a genetics counsellor). They can explain the pros and cons of tests for ADPKD. They’ll also ask about your preferences for testing.

A specialist will also talk you through your test results.

Here is an overview of the two main ways to check for ADPKD:

Pros (benefits) of tests for ADPKD include:

• You may get a clear answer on whether you have ADPKD.
• If you don’t have ADPKD, this can be reassuring.
• If you do have ADPKD:
  • You can get any further tests and treatment you need.
  • You can get advice on diet and lifestyle to manage the condition well.
  • You might be able to take part in clinical trials of new ADPKD treatments.
  • You can learn how ADPKD might affect your children and get help with planning a family.
  • Other family members can be tested too.

Cons (downsides) of tests for ADPKD include:

• The tests might not give a clear answer on whether you have ADPKD. This happens for about 1 in 4 people having the test.
• Finding out you have ADPKD can cause strong emotions. For example, you might feel anxious, angry or guilty.
• If you’re diagnosed with ADPKD, this may affect insurance related to your health (such as life insurance, health insurance, or critical illness cover).

To learn more about insurance and tests to diagnose ADPKD, see our web page on Genetic testing and counselling.

A specialist in taking images of the inside of the body (a radiologist) will do your scan. The most common type of imaging to look for kidney cysts is ultrasound.Ultrasound uses soundwaves to see inside the body.The radiologist will hold a probe against the skin of your abdomen (tummy). This is almost always painless.

Less often, radiologists use computed tomography (CT) or magnetic resonance imaging (MRI) to see the kidneys.

A CT scan uses X-rays. An MRI uses a powerful magnet and radio waves.

To have an MRI you’ll need to lie inside a machine. It doesn’t hurt but people who don’t like small spaces may feel anxious. During a CT scan, a large ring passes along your body but you’re less enclosed than with MRI.

A doctor may offer you an MRI or CT scan if an ultrasound scan doesn’t give a clear answer on whether you have ADPKD.

A doctor can usually diagnose ADPKD if they see kidney cysts on the scan and you have a relative with ADPKD. If you have cysts but no relatives with the disease, your doctor may suggest a genetic test to confirm the results.

If the scan doesn’t show any cysts, you might not have ADPKD. However, if you’re under 40 years old, there’s a chance you have ADPKD but it hasn’t caused cysts yet. Your doctor will offer you further scans in the future to check for cysts.

If you need a definite answer now (for example, because you’re thinking about donating a kidney), a genetic test can often confirm whether you have ADPKD.

ADPKD is caused by a change in a gene (usually in the PKD1 or PKD2 gene).

If a relative has ADPKD and the genetic cause is found, you may be offered a genetic test to see if you have the same gene change.

To do a genetic test a doctor or nurse will take a sample of your blood (or body fluid or tissue). They’ll send this to a laboratory to test. If the gene change that runs in your family is found in your sample this confirms you have ADPKD. If the gene change isn’t found you don’t have ADPKD.

If a gene change hasn’t been found in your family before, the laboratory will check your sample against a list of possible ADPKD genes. If they find a match this confirms you have ADPKD. If they don’t find a gene change known to cause ADPKD, it’s unlikely you have the condition. However, there’s a small chance that you have ADPKD but your gene change is rare or previously unseen. This means it’s not on the laboratory’s list.

Your kidney specialist may be able to estimate how ADPKD is likely to affect you based on your genetic test results. However, the way the condition affects people with the same gene can vary.

You can learn more on our web page Genetic testing and counselling.

You can also watch a video of a talk that expert Professor Sayer gave about genetics and genetic testing in ADPKD.

If you’re diagnosed with ADPKD, you may feel strong emotions. Many people feel shocked or overwhelmed at first.

As you think through the news, you and your family are likely to have questions and concerns. It’s a good idea to ask for a follow-up appointment with your kidney specialist to chat these through. If you have not been referred to a kidney specialist yet, ask your doctor (GP) to refer you.

Your kidney specialist can explain how they’ll monitor your health. They can also explain how ADPKD might affect you now and in the future.

Your GP might be able to arrange for you to chat with other specialists too.

Getting a diagnosis of ADPKD usually doesn’t mean making big changes to your life.

Many people with ADPKD have decades of good health before ADPKD affects their body.

People with ADPKD are usually still able to work, have children, go on holiday, keep active and drink alcohol if they want to.

Our website has information about life with ADPKD including how to live well with the condition and appointment tips.

Our helpline is open Monday to Friday 9.30 am to 5.00 pm, except bank holidays. Call us on 0300 111 1234 for emotional support, practical advice and information. You can also contact us on Facebook messenger or by emailing [email protected].

If you’re diagnosed with ADPKD, your kidney specialist will offer you a blood test and urine test to see how well your kidneys are working. They’ll also check your blood pressure and general health.

If you haven’t been referred to a kidney specialist yet, ask your GP to refer you.

You’ll have check-ups with your kidney specialist and doctor throughout your life. This is so they can monitor your health and recommend treatments when needed. Depending on your symptoms, you may see other specialists or a counsellor too.

If your child has kidney symptoms, your doctor might offer them a kidney scan or genetic test for ADPKD.

Usually, children without symptoms can only have a test if they have a parent with ADPKD. This is because ADPKD is very rare unless a parent has it.

Your child can have ADPKD tests at any age (if they’re eligible).

If your child is offered an ADPKD test, think about the pros and cons before going ahead. For example:

• A diagnosis means your child can get the right check-ups and care.
• If tests show that your child doesn’t have ADPKD, this can be a relief.
• Having tests might worry your child.
• If your child is diagnosed with ADPKD, this might affect their insurance in the future.

ADPKD tests sometimes don’t give a definite answer on whether a child has ADPKD. Ask your doctor to explain whether the results are likely to give a clear answer for your child and why.

Experts recommend that children with ADPKD (or who might have ADPKD) have a blood pressure check every year. This is because ADPKD can cause high blood pressure.

See Symptoms of ADPKD and tests in children for more information.

• ADPKD basics
• Genetic testing and counselling for ADPKD
• Video of a talk that expert Professor Sayer gave about genetics and genetic testing in ADPKD
• High blood pressure
• Symptoms of ADPKD and tests in children
• Support from the PKD Charity

The NHS website has information on ultrasound scans, CT scans, MRI, and genetic testing.

All of our publications are based on references but these are removed for ease of reading on our webpages. A version of this webpage with references included is available upon request by emailing [email protected]

Written by Hannah Bridges, PhD, independent medical writer, HB Health Comms Limited. Expert review by Dr Grahame Wood, Consultant Renal Physician, Salford Royal Hospital, Northern Care Alliance NHS Foundation Trust, UK.

With thanks to all those affected by ADPKD who contributed to this publication.

Ref No: ADPKD.HIAD.V3.0
© PKD Charity 2025
First published: June 2025
Due to be medically reviewed: June 2028

Disclaimer: This information is primarily for people in the UK. We have made every effort to ensure that the information we provide is correct and up to date. However, it is not a substitute for professional medical advice or a medical examination. We do not promote or recommend any treatment. We do not accept liability for any errors or omissions. Medical information, the law and government regulations change rapidly, so always consult your GP, pharmacist or other medical professional if you have any concerns or before starting any new treatment.

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The PKD Charity Helpline offers confidential support and information to anyone affected by PKD, including family, friends, carers, newly diagnosed or those who have lived with the condition for many years.