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Chronic Kidney Disease in Children Study: CKiD

The NIH’s National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK); National Heart, Lung, and Blood Institute (NHLBI); and Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) fund the Chronic Kidney Disease in Children Study (CKiD) to define risk factors that lead to the development of chronic kidney disease (CKD) in children and how CKD progression affects

  • factors that raise the risk for cardiovascular disease or heart and blood vessel disease

  • cognitive development or the brain’s ability to think, remember, or reason

  • quality of life

  • growth

A better understanding of the risk factors that lead to CKD may result in clinical trials to improve the health outcomes of children with CKD.

In newborns and younger children, kidney disease is most often caused by birth defects that lead to problems with kidney and urinary tract development. In older children, kidney disease is most often caused by inherited diseases that are passed from parent to child or systemic diseases that children develop involving many organs in the body. In children and teens with kidney disease, obesity can increase the severity of kidney disease, risk of cardiovascular disease, and risk of type 2 diabetes later in life.

Results

Information from the CKiD Study is still being gathered. So far, the study has helped researchers develop better screening tools and treatments for CKD and its complications. It has also helped researchers better understand the causes of CKD and the relationship between CKD and the risk for cardiovascular disease, cognitive development, other complications, and racial disparities.

Screening and Treatment for CKD

Results from the study led to more accurate tools to evaluate kidney function in children and teens. Results from the study also helped the medical community improve screening and treatment for conditions that occur in children and teens with CKD. For example, researchers

  • developed techniques to help estimate how much time children with CKD have before needing kidney transplants

  • found that CKD progresses more quickly in children whose blood contains more uric acid than normal. Researchers are using this information to see if they can slow CKD progression in children and adolescents by trying to lower their uric acid levels

  • found that certain types of drugs that control blood pressure might lengthen the time before children with CKD need kidney transplants

Causes of CKD

The study showed that some participants without any known family history of kidney disease had an inherited cause for CKD and

  • about 7 percent of participants had changes in a group of genes known to be linked with kidney disease and other genes thought to be related to kidney disease

  • some of these genes are linked to a higher risk for problems, such as cardiovascular disease

Risk for Cardiovascular Disease

The study showed that

  • about half of the children and teens had signs of cardiovascular disease including high blood pressure, structural changes of the heart and blood vessels, and abnormal levels of blood fats at the start of the study

  • children and teens with low kidney function also had the highest chance of having abnormally high levels of blood fats

Cognitive Development

The study found links between CKD and children’s cognitive development. For example,

  • about 20 to 40 percent of participants had delays in cognitive development and scored lower on IQ and other tests at the start of the study

  • children with mild to moderate CKD whose blood pressure varied greatly from visit to visit scored lower on tests that measure brain function than children whose blood pressure was more stable

Other Complications

The study showed that

  • almost half (45 percent) of the participants had anemia, which can lead to other health problems, including poor or slowed growth, and death

  • children and teens who had a low birth weight or who were small for their gestational age may also have slowed growth

  • children whose kidney function was lower than that of other children with CKD were more likely to report a decreased appetite over a year; and those whose appetite decreased were more likely to be hospitalized and report a poorer quality of life

Racial Disparities

The study showed specific risk factors for the development and progression of CKD in African American children, including

  • premature birth

  • low birth weight

  • inherited genes that increase the risk of developing CKD

Researchers are studying how these risk factors interact with societal disparities, such as

  • lack of access to timely health care

  • unequal health care treatment

  • socioeconomic status (education, employment, and income)

  • neighborhood and environmental factors

  • racial biases

  • potential bias in access to kidney transplants

Study Size, Participant Demographics, and Study Design

The CKiD Study started in 2005 and is ongoing. CKiD involves over 1,000 children with mild to moderate kidney disease. To take part in the study, participants could not have had dialysis treatment within 3 months of study enrollment.

At the beginning and throughout the study, the participants received physical examinations and blood and urine tests to check for kidney and heart issues, and special tests that check cognitive development. Participants also provided information used to assess quality of life and behavior.

The CKiD Study is taking place at more than 50 medical centers in the United States and Canada.

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October 2020