RecruitingOBSERVATIONAL

Hypertension in Children and Young People at Risk of Autosomal Dominant Polycystic Kidney Disease

This research focuses on children and young people aged 12-17 who have a parent with Autosomal Dominant Polycystic Kidney Disease (ADPKD), a condition that causes fluid-filled sacs (cysts) to grow in the kidneys. The study aims to find out how common high blood pressure is in these young people. Researchers will use special techniques like MRI scans for quick diagnosis and genetic testing to understand more about ADPKD. The main goal is to see if measuring blood pressure earlier could help treat the condition better and prevent serious heart problems later in life. This could potentially change how doctors measure and manage blood pressure in children and young people with ADPKD.

At a glance

Status

Recruiting

Sponsor

King's College London

Enrolment target

200

Start

15 Aug 2025

Estimated completion

01 Mar 2028

Autosomal Dominant Polycystic Kidney Disease (ADPKD

What is this study about?

Autosomal Dominant Polycystic Kidney Disease, or ADPKD, is the most common inherited cause of kidney disease. It means you get fluid-filled sacs, called cysts, in your kidneys. While most people with ADPKD don't show symptoms until they're adults, and kidney problems usually develop later in life, doctors are starting to notice that high blood pressure can affect younger people with the condition. This is important because high blood pressure can lead to heart problems and other health issues even before the kidneys become severely damaged. Knowing about it early could help manage it better and reduce risks later on.

Traditionally, there hasn't been a big focus on checking for ADPKD in children and young people, partly because the diagnostic tests were mostly designed for adults and symptoms often appear later. However, studies are now suggesting that about a quarter of young people with ADPKD might already have high blood pressure by their late teens. Discovering and treating high blood pressure early could be a game-changer, helping to protect their hearts and overall health in the long run. This study wants to find out just how common high blood pressure really is in young people (aged 12-17) who are at risk of ADPKD.

By taking part, you would help researchers understand this condition much better. They believe the information gathered could completely change how doctors measure and manage blood pressure in children, especially those with ADPKD. This could lead to earlier diagnosis and treatment, improving the health and well-being of many young people for years to come. The study team is working closely with people affected by ADPKD to make sure their research is relevant and helpful.

Key takeaways

The study focuses on young people aged 12-17 whose parent has ADPKD.
It aims to understand how common high blood pressure is in this group.
Tests include MRI scans, blood pressure checks, and genetic testing.
Findings could lead to earlier diagnosis and better health management for young people with ADPKD.
Participation is voluntary, and you can withdraw at any time.

Who may be eligible?

To join this study, you need to be aged between 12 and 17 years old. An important requirement is that one of your parents must have a confirmed diagnosis of ADPKD. It's also necessary for you, or your parent (if you're under 16), to agree to genetic testing for ADPKD and understand what this means.

You should also be able to comfortably undergo some key tests. This includes having your blood pressure measured, potentially wearing a monitor for a day, and having an MRI scan. You'll also need to have a blood test.

However, you cannot join the study if you are 18 or older, or if you can't tolerate the required tests. You also wouldn't be able to participate if you have certain other health conditions, like heart problems you were born with, or if you have a very rare specific genetic change called TSC-PKD1 mutations, as these might make it hard to understand the study results. Lastly, if you are not willing to have genetic testing for ADPKD, unfortunately, you won't be able to take part.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

Am I aged between 12 and 17 years old?
Does one of my parents have a confirmed diagnosis of ADPKD?
Am I able to undergo tests like blood pressure measurements, MRI scans, and blood tests?
Am I (or my parent, if I'm under 16) willing to have genetic testing for ADPKD?

Answer every question to see your result.

What does participation involve?

If you decide to take part in this study, you would undergo several assessments. These include having your height and weight measured, and your blood pressure taken. You would also have a special test to look at the stiffness of your arteries, which is a simple, non-invasive measurement. The study involves a detailed MRI scan of your heart and kidneys, which helps doctors see these organs clearly without using X-rays. You would also give a blood sample for various tests, including genetic testing to look for ADPKD. The study doesn't involve taking any specific medication given by the trial, and the exact number of visits isn't specified in the summary, but it would involve completing these appointments. The total duration of your involvement would depend on the schedule of these tests.

Potential risks and benefits

Taking part in this study might offer some potential benefits, such as gaining a better understanding of your own health, specifically regarding your blood pressure and kidney health. The information gathered from your tests could be shared with you and your doctor. While the study itself doesn't involve new medications, undergoing tests like MRI scans and blood draws carries very small, common risks, such as temporary discomfort from the blood test or the need to stay still during the MRI. Your comfort and safety are important, and the research team will explain everything thoroughly. Remember, taking part in any study is completely voluntary, and you have the right to withdraw at any time without giving a reason, and this won't affect your medical care in any way.

Locations (1)

Some site locations are approximate. We're improving this — please verify with the trial team before travelling.

Evelina London Children's Hospital
Verified postcode
London, United Kingdom· Recruiting

Common questions

What is ADPKD?

ADPKD stands for Autosomal Dominant Polycystic Kidney Disease. It's a common inherited condition where fluid-filled sacs, called cysts, grow in your kidneys.

Why is this study looking at blood pressure in young people?

Doctors want to find out how common high blood pressure is in young people (12-17) with ADPKD. Catching and treating high blood pressure early could help protect their heart and kidney health in the long run.

What is a genetic test?

A genetic test is a medical test that looks for changes in your genes. In this study, it's used to help diagnose ADPKD and understand more about the condition.

Will I have to take any new medicines in this study?

No, this study doesn't involve taking any new or experimental medicines. It focuses on measurements and tests to understand the condition better.

What are the main tests I would have?

You would have your height and weight measured, blood pressure checks, a non-invasive test for artery stiffness, an MRI scan of your heart and kidneys, and a blood test for genetic testing.

How to find out more

Benjamin Boxer, PhD

gstt.hiya.pkd@nhs.net +44 20 7188 4770 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.