Kidney Genetics Clinic

Contact the Kidney Genetics Clinic

What is the Kidney Genetics Clinic?

The Kidney Genetics Clinic sees babies, children and teens with kidney problems that are or might be caused by changes (mutations) in their . Experts from Nephrology, Clinical Genetics and Genetic Counseling come together to evaluate your child’s condition and recommend genetic testing to make or better understand a diagnosis. Based on the results, we recommend screening and treatment strategies to match your child’s needs.

Seattle Children’s cares for more children with complex kidney conditions than any other place in the Pacific Northwest. In the Kidney Genetics Clinic, many of our patients have other health concerns along with kidney problems. Some haven’t had genetic tests yet. Others have already had testing somewhere else, but the results have not provided clear answers.

Why do kidney genetics matter?

It can be important to know if your child has a genetic mutation linked with their kidney health and which mutation they have. This information may help your child’s care team:

  • Make a diagnosis more quickly
  • Predict how the condition is likely to affect your child’s kidneys over time
  • Tell if your child has, or is likely to develop, health problems with other parts of their body because of that mutation
  • Provide the best treatment, like the most effective medicine, for your child’s condition based on the underlying cause
  • Find a for your child that is testing a new treatment approach
  • Talk with you about the chance that other people in your family (including you and any future children) may have the same mutation

Services We Provide

Team-based evaluation of kidney problems

Our clinic is among very few in the country that have not only a but also a . Here, your child will see both types of doctors together in the same visit so you get their combined expertise. At most other hospitals and clinics, children see a nephrologist and then they may have a separate visit with a geneticist.

With our team approach, our doctors can evaluate your child’s kidney condition and also consider if your child might have a genetic condition that affects other parts of their body.

  • What happens at your child's evaluation?
    • Our will meet with you and your child to talk about your family medical history and any genetic testing your child has already had.
    • The nephrologist and geneticist will examine your child. We’ll talk with you about your family history, your child’s health history and the results of any tests so far. The goal is to tell if genetic testing might be helpful.
    • If we suggest genetic testing, we’ll explain the options and what the results might tell us in relation to your child and family. We’ll also answer any questions you have.
    • If your family decides to do testing, we’ll coordinate the tests. Sometimes tests can be done the same day. Sometimes there are reasons we need to make a separate appointment for testing, or families want to time to think about it before deciding on tests.

Comprehensive genetic testing, including exome/genome sequencing

We use a broad range of genetic testing methods to understand your child’s condition. Because our team includes a geneticist, we can offer more types of genetic testing than nephrologists offer on their own, including exome/genome sequencing. Exome/genome sequencing may be especially helpful if your child has a complex condition and other tests haven’t led to a diagnosis.

Our team can order genetic tests, interpret the results when they come back and explain what they mean. We can also help interpret the results of genetic tests your child had somewhere else. Sometimes insurance companies deny coverage for genetic testing. We have experience working with families and insurers to get approval.

  • Types of genetic tests we offer
    • Tests for a single genetic mutation
    • Tests that look for mutations in more than 1 (gene panels)
    • Exome sequencing and genome sequencing to look at large amounts of your child’s DNA for mutations

Research to advance pediatric care

Members of the Kidney Genetics Clinic team work on research funded by the National Institutes of Health, including studies to:

  • Detect gene mutations that standard genetic testing methods may miss
  • Develop new technologies to improve the detection of these variations

If standard testing hasn’t provided the answers needed for your child’s care, we may have other approaches available through a study. If your child qualifies, we’ll talk with you about the option to take part.

Conditions We Treat

We provide care for babies, children and teens with a range of conditions that affect the kidneys and may be caused by a genetic mutation, including these:

  • Chronic kidney (renal) disease

    Kidney disease can come on suddenly (acute) or be long-lasting (chronic). Chronic disease usually develops slowly. Over time, the kidneys are less and less able to carry out their normal functions. Children with chronic kidney disease may develop kidney failure. Read about kidney failure.

  • Glomerulonephritis

    Glomerulonephritis (gluh-mer-yuh-lo-nih-FRY-tus) causes swelling and redness (inflammation) in parts of the kidney. This makes it harder for the kidney to separate wastes and extra fluid from the blood. It can cause swelling (edema), blood in the urine, high blood pressure and tiredness (fatigue). This can sometimes lead to lifelong (chronic) kidney disease.

  • High blood pressure (hypertension)

    High blood pressure is more common in adults, but children and teens can also develop it. If untreated, high blood pressure can damage many organs of the body over time. These include the heart, brain, kidneys and eyes. The normal range for blood pressure depends on your child’s sex, age and height. Read about our Hypertension Clinic.

  • Kidney failure

    Kidney failure happens when the kidneys can no longer remove all of the wastes from the blood. Kidney failure can either be sudden (acute) or long-lasting (chronic). Chronic disease usually develops slowly. Your child may not show any symptoms until their kidneys can remove only a small amount of waste. Read more about kidney failure.

  • Kidney stones

    Kidney stones form when solid materials in urine build up in the kidneys and . Small stones can pass out of the body on their own. Large stones may cause problems. They can be very painful when they block the kidney or the tubes that carry urine from the kidneys to the bladder. Read about our Kidney Stones Clinic.

  • Nephrotic syndrome

    Nephrotic syndrome happens when large amounts of protein get into the urine, leaving low levels in the blood. Blood proteins act like a sponge, helping water to stay inside your child’s blood vessels. When protein gets into urine, not enough is left in the blood. Water moves into body tissues, causing them to swell.

  • Polycystic kidney disease

    Some kidney diseases happen because of problems with or that are passed down from parent to child. These genetic diseases include polycystic kidney disease (PKD). In PKD, many fluid-filled cysts grow in the kidneys and limit how well they function.

Scheduling an Appointment

Who's on the team?

Genetic Counselor

  • Mike Gibbs, MS, CGC

    Mike Gibbs, MS, CGC

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Contact Us

For more information, contact Clinical Genetics at 206-987-2056. If you would like an appointment, ask your child’s primary care provider or nephrologist for a referral.

Providers, see how to refer a patient.

Telemedicine

You may be offered a telehealth (virtual) appointment. Learn more.

Paying for Care

Learn about paying for care at Seattle Children’s, including insurance coverage, billing and financial assistance.